Today's Reflection

Overview Summary

2012-02-05T10:45:00.000-05:00

Thought it was about time to give an "Overview Summary". I know some are confused about what is going on so hopefully this will help clarify. (And I'll throw in a few pictures just for cuteness.)

Manny was born with extreme hypotonia (floppiness) and muscle weakness. Genetic tests done, no results. (And the reason is because his condition is EXTREMELY rare and they wouldn't have tested for it.)

8 months old, his birthmother took him to the hospital (he was very sick) and placed him for adoption.

Last week after Manny's PICC reinsertion procedure. Surgical cap and Versed on board!

During that month, they took him off oral feeds and moved him to a gtube with nissen fundoplication. Up until that point, he had been able to drink via bottle, but now he was aspirating every swallow and had GERD (acid reflux).

9 months, we picked him up from the hospital to adopt him.

He retched, a LOT.

11 months, he got pneumonia and landed in the hospital (Same one we're at now). Dr. Cartaya ran miscellaneous tests including a brain MRI. That was interpreted as "End Stage Leukodystrophy" and the prediction was he wouldn't live even another month. We went home with hospice and a DNR.

On the way to a procedure in his chariot, er, I mean wagon

He retched, even more. And would affect his breathing/heart rate.

By 14 months or so, I pushed to have the "palliative care only" removed so he could begin some treatment. He was not behaving like his condition would indicate. I began to press for a different diagnosis.

By February 2011, he has worsening GI symptoms so a study is done. Stomach has stopped working. Put him on a GJ tube.

Multiple issues with the GJ tube over the next few months.

April 2011, muscle biopsy results show the actual diagnosis is Merosin Deficient Congenital Muscular Dystrophy. We begin to learn what this entails. It describes him to a T ... except the extreme feeding issues.

Continued GJ issues. Increasingly worse to the point where I was afraid for his life.

September, 3 hospitalizations regarding extreme retching (to the point of respiratory distress, tachycardia of close to 300), etc. Realize we need more help. His Muscular Dystrophy doc suggests Shands.

October, spent the whole month in Shands in Gainesville as they are the best Peds GI around. After MANY MANY tests, they determine he would have to go on TPN and give him a PICC.

November 10, his PICC cracks and they put in a temporary one until they can do a Broviac.

What his rash DID look like when they changed out the PICC (See yesterdays post for the current picture)

December 2 -28 hospitalized for a central line infection (Sepsis). Remove the broviac and go home on a PICC.

January 25, 2012 - PICC acting up, rewire it. Go home with a rash around the site.

February 3 - 6 days later, readmitted for cellulitis around the PICC site. PICC removed
February 4 - awaiting negative blood cultures so we can put in another broviac.
February 5 - surgery scheduled for Monday or Tuesday

Meanwhile, on Feb 13, we are scheduled to go to the NIH. Their Neuromuscular Disorders Clinic has actually SEEN some kids with his underlying condition. We sent all of Manny's files there, including MRI, muscle biopsy, etc. They were struck by his file since he definitely has Merosin Deficient CMD but these GI issues are atypical for the condition. We're hoping they can figure out what is going on.

Combine THEIR thoughts with the Metabolic Geneticists thoughts, we have an excellent team.

Why are we fighting so hard? Simply put: I don't think it should be life-threatening to feed my child. But currently it is.

Which floor?

2012-02-03T22:20:00.002-05:00

Thursday: Manny went to the Pediatric Metabolic Geneticist. This meeting was to help discuss next course of treatment/testing.

I presented the info to her this way: Bottom line is ... either the literature is wrong and Merosin DOES affect Smooth Muscles or Manny has a SECOND very rare disease. After a long discussion, we decided the best thing would be to contact the NIH (where we are supposed to go next week) and collaborate with them.

There are some tests she wants done on the actual muscle that was biopsied. It's the best hope of finding the issue. The hope is to get to the bottom of it so Manny can eat again. Plain and simple.

I was very excited about this visit and the outcome.

Thursday night: The kids had a PTA fundraiser at Chuck E. Cheese. Because it's Manny's favorite place, I took them, even though Manny wasn't 100%. His arm is the only problem and we have it thoroughly covered so I figured why not?

Friday: Manny had an appointment with the cardiologist. The doctor was able to hear a new murmur. He thinks it's an "innocent" murmur but wanted to be sure so he strapped a 24 hour holter monitor on him.

While we were on the hospital campus anyway, I decided to look up the IV person, Stephanie. She is the one who helped put this thing in last Friday night. We talked for a while and then called Dr. Cartaya "Doc" to come help decide what to do (since this was HIS idea). I talked with him privately for a bit ... told him my concerns about not being able to keep the site sterile because the skin was still weeping and causing the bandages to peel up. We bounced some ideas.

Stephanie also called the Wound Nurse who had great ideas. After a long discussion, we came up with a plan of action on how to care for the wound. (The one I'd been seeing every day for the past week.) Doc left.

Got into the room. Pulled off the dressing. And I was in SHOCK at what we saw. This was no longer skin being irritated or red or raised bumps. The whole thing was PURPLE and smelled. There was infection. There was DEEP tissue cellulitis. It is BAD. This picture doesn't even begin to do this justice!

The skin is weeping. The purple is deep, deep cellulitis. There's an on smell on the skin. There's a red rash beyond the borders of the bandages. There is lymph node involvement under the armpit. The arm is more swollen today than day 1

The nurses were shocked too. Stephanie immediately called Doc to come look at it. He walked in and eyes got big. He basically asked which floor I'd like to be admitted to. This thing HAD to come out NOW!

Now you realize, I'd come for a 2 hour doctor appointment. I had nothing with me. NO cell charger, no laptop, no clothes, nothing. (Not to worry, I had a bag packed still at home ... sadly, I had a feeling that it was wise to keep it packed.)

I text Dan, "Being Admitted". He replied, "Long or short". (I think that conversation says it all... we got to the heart of the matter... no emotional outburst, just business. Sad.)

Stephanie gets an IV in. Draws blood. Takes out the PICC line. Attends to the arm. All this is done and we are not even admitted. We are not in the system at all. This was sooo not the way it was supposed to go. We are very "off script". They can't even send the blood yet because there are no labels, etc for it.

Cartaya goes and writes up the orders. I carry the drawn blood with me. I get registered. We are admitted. Back to the same floor we just left, less than a week ago.

Dan gathers up my stuff and brings us dinner. Kids are all too comfortable with this environment too.

Tonight, he's all comfy in his big bed. No crib was available so they put him in a regular bed. He looks so tiny in it! But there's room for us to snuggle, which is nice too.

Me? I know you're all wondering. I am on pause again. Truthfully, I wouldn't be shocked to hear that he has a blood infection/sepsis. I am not hoping for that, just a gut feeling. And I am praying that my gut is wrong this time. (It rarely is!) So I am praying that God just heal him and heal his blood.

The plan? Wait for the blood cultures NOT to grow again. IF they don't, we will try to put in a Broviac on Monday. If that goes well, we could even go home as early as Monday evening. That is a good plan. I like that plan.

If it does grow something, we're here for the long haul again. We hope and pray that this isn't ahead of us this time. I do not like this plan.

So ... if we get Plan A, I'm good. I'm fine. I'm just a bit numb.
If we get Plan B, I think I will need some kind of psychiatric intervention. (Mostly kidding, I think.)

So for now, I hunker down. We go back to living one day at a time.

If anybody is still reading and along for this VERY bumpy ride, Thanks! We're still in need of all the support we can get. This story needs to be told high and low. Apparently, God wants to get a lot of Bang out of Manny's story and He wants many people to know about His goodness.

Blessings!

The never-ending dressing

2012-01-31T21:59:00.001-05:00

Saturday at 5pm, we hit the 72 hour mark of no growth on the blood cultures that were taken at the hospital. At that point, they considered the original positive to be just a contaminant and they were ready to send us home.

The problem was the skin around the PICC site. You see, the TPN (fluid he is fed in his veins) had been slowly leaking and caused a chemical burn on his skin. The area was about 3.5X4.5 inches. And skin that is that raw and inflamed can easily become infected or get cellulitis. If that happens, that is BAD NEWS since it is right at the opening in his arm that leads directly to his heart.

Signs of infection are redness, swelling, tenderness, warmth, oozing ... uh ... he had them ALL. So I was quite concerned. On a regular kid, they would have yanked that PICC line and given him another one. But they didn't because they're trying to save veins. THIS is what told me the extent to which they're willing to go to save a vein. And that spoke volumes.

Now the next problem became the adhesive. They don't want a huge area of adhesive (so that the skin can heal while not under the dressing). And adhesive doesn't stick too well when it's wet. Well, Manny's arm is weeping and draining from the sores so it's constantly wet. They had to change the dressing Friday night, Saturday morning and Saturday afternoon. Then Saturday night they just reinforced it. (Usually it's changed once a week.)

We got home late Saturday night and it was already needing more reinforcement.

Sunday we went to the park and had a wonderful time! It was so great to be outside again. The weather was perfect and we could just live out side. (I keep long sleeves on him right now to minimize anything possibly getting in the dressing.)

Monday morning, it was clear that the dressing needed to be changed ASAP as it was now pulled back and the PICC site was no longer sterile ... that means germs can get in and we run the risk of infection. Nurse drew labs and changed the site. She was horrified by how it looked, afterall, she'd been there just last Monday to do the dressing and it was perfect. It was quite shocking how bad it got so quickly.

This morning, I woke up and looked over at him and was just in awe of this little guy. He was just sleeping so peacefully that I had to snap a picture.

Of course it woke him up and the next picture is his immediate reaction. THIS is how he wakes up every morning. Bright eyes.

Tuesday morning, it was pulled quite a bit off again and I reinforced it. Went to Manny's pediatrician and she thought he looked great (except the arm of course). We talked about when to call "Uncle" on the arm.

By 4pm, the dressing needed even MORE reinforcement and I knew this was't good. At 6pm, I took off his shirt to change him into PJs and the whole bandage had rolled up! The sutures were coming off, there was basically nothing covering the PICC site and I could just feel the germs getting in. (Not really.) I called the home health on call nurse and told her what was going on. She came over immediately and changed the dressing for us. Problem is - we had to use a HUGE dressing just to see if we can get the dressing to last more than a day. But that means the arm will have a hard time healing.

Also today, Manny started retching horribly. He used to do that all the time. But since he's been on TPN, he stopped completely. It was a miracle! The only time he's retched since October was during December when he was on mega doses of antibiotics and antifungals. Even then, he only did it a few times and it was relatively mild.

But this is different. This is like he's sick and dry heaving. I've not seen this type of retching with him before. Very concerning though because he does this quietly. You can't hear him at all, he just stops breathing. Then he aspirates and then there is that whole chicken/egg thing. It's scary to watch him try to breathe.

After it's over he says, "I OK. I was choking."

And the last concern for the night? He's got a fever 99.3 ... At 100.4 I have to go to the hospital and be admitted. Period. End of story.

Normally, we can wait up to maybe 12-24 hours of a fever before we have to go in for blood work, but given he has this huge arm infection, and he already has all the bad signs of possible infection on his arm, we have to go in. I guess I could say that we're ALREADY in the gray area, if he gets a fever, it's no longer gray ... it's black.

So ... as you can see ... we still need tons of prayers.

Blood Culture Negative!

2012-01-27T22:27:00.001-05:00

I will try to recount the day. (Much is medically complex.)

Manny slept well. The nurse got the hint. (Yay).

The day nurse today was one we'd had before and let's just say that by the end of the day, she'd shared some pretty personal information. I got to bless her, speak into her life, hug her, comfort her.

The Infectious Diseases doc came in and was pretty certain that this blood culture was either a contaminant or a transient infection. The second set of cultures drawn were NOT positive! (Yay) This is incredibly great news.

He suggested a plan ... and the plan made sense, but didn't take into account the whole overall situation. So we took his plan under advisement but knew that Cartaya would have his own say about the whole thing.

Finally Cartaya came in and he and I talked for quite a while about the pros and cons, the risks/benefits of all the options we have. Eventually the head of the IV team (Stephanie) came in and she was in on the conversation.

The bottom line is ... Manny's situation is unique. To treat him, you have to deal with a lot of "gray" areas. We all basically make this up as we go. And today was no different.

By the end, we settled on a very strange solution. I'll try to explain.

In most cases, the right thing to do would have been to pull the PICC line and put in a broviac. (That was the Infectious Diseases doc's suggestion.) But for Manny, there is a real possibility that he could run out of veins. And THEN what? So we have to protect every vein like it's gold. We can't just go pulling lines.

So ... since this line wasn't infected, we could still use that vein. BUT, since the line was out of place, it had to be repositioned. To do that, you have to go in and rewire it. Basically, they put a wire in where the current line is, pull the old line out and the reinsert a whole new PICC line. So it's a clean, new line but in the same vein.

Now to the next problem .. his HORRIBLE skin rash (allergic reaction to the dressing/bandages). There is even some skin break down where there is the clamp (stat lock) that holds the line in place (making sure it doesn't go in or out). This arm is a MESS. (It wasn't.)

So we decided to suture the PICC line in place instead of using a stat lock. This is basically unheard of. But it's what we needed to give the arm some much needed break from the stat lock.

It worked! Dan and the kids arrived just as we were headed down to the procedure so they waited with me in the waiting room.

When we got back to the room, we noticed that his bandage was completely pulled away from the site and his whole PICC line was completely exposed (A MAJOR MAJOR problem and a potential source of infection .. this field is supposed to stay completely sterile). The nurse immediately put tegaderm on it to help until Stephanie could arrive.

Once she got here, we noticed there was some leakage around the PICC site. (Not good news ... could mean that there is a compromise in the PICC line.) The whole bandage had to be changed ... which involves an alcohol based cleaning solution. Imagine THAT on open wounds about 3 inches by 4 inches wide! (Poor baby). Something we have to keep an eye on. If it keeps leaking, the PICC will have to be removed.

About 8pm he fell asleep. We're putting oxygen directly on his arm to try to keep it dry and see if the parts that are exposed can start to heal. We have to keep an eye on this too. If the skin doesn't heal, we have to remove the PICC.

Finally, there is one spot that looks like it MIGHT be phlebitis. (But it also could just be rash.) It's possible that the old PICC had curled around and was sending the TPN back up the vein. (There was a lot of biofilm on the PICC ... and when there is that, it sometimes does that.) It's complicated ... but the bottom line is - we have to keep an eye on this as well. If it's phlebitis, we have to remove the PICC.

So as you see, there's a lot of great news ... but also a lot of things we have to keep our eye on.

If all these are under control tomorrow, we go home!

And we wait

2012-01-26T23:18:00.002-05:00

So can you PLEASE tell me ... why in the world did the night nurse feel the need to wake me up to tell me the meds were given? I don't mean she was loud (which she was). I mean, she walked over to my side of the bed, grabbed my arm (to which I would startle) and say, "I gave him his X med". In my sleepy stooper, I didn't even THINK she would do it for each of his middle of the night meds and problems with his pump.

But.She.Did.

Must work on new strategy for tonight.

Other than that, it was a fairly uneventful night. Manny's fever went away.

This morning, labs are starting to come in. There's no indication of anything horrible ... but there wasn't last time initially either. So nothing helpful yet.

There is an interesting thing going on ... Manny's PICC is "acting up". It flushes fine. And the fluids are running just fine through it (mostly). But periodically, there's an error where nothing will go through. Makes me think that the PICC is slightly out of place or something. And then sure enough, the report from the chest xray taken last night just arrived and confirmed what I suspected. It's out of place. Not horribly, but will need to be adjusted likely today. (That's not a huge deal, not much more than a dressing change, which he already does once a week. He doesn't like it but it's not super painful or something.)

And we wait.

7pm ... the day was fairly uneventful. Infectious Diseases doc came by and was still distressed that there was no new news on the blood culture done on Monday evening. So after he left, I called my contact directly. He said he'd call me the moment there was news. And he did ... about 2 hours later. It came back with "Gram positive bacillus". So you know how yesterday I said it was like asking what you ate and you responded with "food"? Well this is like saying, "Warm food" ... still not very helpful.

In almost all cases where Bascillus is found, it is considered just a contaminant. They almost always rule it out as such immediately. UNLESS a child has a central line. Throw in that he has a low grade fever intermittently and pain at the PICC site and they have to do the complete work up. One doc wants to pull the line NOW. The other says not to. We're in some gray area, clearly. Both agreed, however, to start immediate, aggressive treatment just in case.

I understand that your past reactions to being septic determine your next time. And as we all know, he didn't do very well. It's one of the reasons they ask things like if you've ever had a blood transfusion or on a vent or been resusiciated, etc. (All of which is YES.) So they have to treat this as if it is real until there is verification of a negative blood culture.

Doc came in and I pressed him until he said basically it's 50/50 if this is a real infection (i.e. similar to last time) or a "nothing" thing.

So the scenarios ... if this comes back positive, we should know by Friday afternoon ... that's how quicky the other one came back positive. If we pass that time, we aren't exactly in the clear but we can start to breathe a sigh of relief. Tomorrow is a key time for us.

Now, the chest xray was done to see if his PICC was in place. It is not. It's not horribly out of place. It's still usable. But it's short of where it should be. It also has a kink in the arm portion of it. This is likely his source of intermittent pain he's been complaining about.

So the IV team came to see if she could adjust it. She can't push it back in further into place, but she could adjust the kink. I'm so glad she did because when we took off the bandages (some are clear and some you can't see through), there was a LOT of skin rash ... almost the entire area had bright red raised bumps. And there was some skin breakdown under the statlock. So she cleaned it, let it air, used a new type of dressing and moved the location of the statlock. I think it will help BUT there's still a lot of rash in the area.

Doc and I have decided a few things in our plan of care for Manny. 1) We will not be doing a broviac any time soon. Because IF this is seemingly negative, we treat it as such and put in this more permanent line and it turns out to be something afterall, we are right back where we started in early December and we ALL want to avoid that! 2) I do NOT want to go home with this PICC line in. Due to it being slightly out of place and the huge amount of rash/skin breakdown in the area, we would be playing with fire to do that. 3) Therefore, we know we will be putting in a new PICC.

What we DON'T know is when that will be. But if nothing grows in his latest culture by say Saturday afternoon, that will be our cue that this was most likely a fluke and it's "nothing". We can then pull the line and put in a new one. They don't do PICCs on the weekend usually so Monday is likely our day.

And all this changes if something grows on that culture.

Holding our breath.

How are we holding up? As well as can be expected. This part of our lives have become "routine". We have procedures in place for everything to what to pack, what groceries to have at home, toys/movies for Manny, who does what role, back up meal providers, etc etc. We have this all too practiced. Makes for a smooth transition in and out of our hospital life and real life.

11pm, about to head to bed. It's the same nurse from last night so I guess I'm supposed to learn to deal directly with people. Not too passive, not to aggressive, but "just right" (Like Baby Bear) and be appropriately assertive. So I say to her basically, thanks for letting me know when you gave the meds last night, but that's really not necessary and that I trust her to give them accurately and appropriately. But if she needs my help in any way, if there's a change in status for Manny, to please feel free to wake me up. I have no clue how she actually took it but she seemed to get the message. I'll know about 1am (when the first night med is due).

Hey ... Does everyone feel like they're getting an honorary medical degree by reading this blog?

You gotta be kidding me

2012-01-25T22:15:00.000-05:00

Every day you wake up, you truly have no clue what the day is going to bring.

Today? Well, the plan was to go to the grocery store. Go to the Surgeon's office for a preop for his broviac placement tomorrow. (Why? It's been a month since Manny's PICC was placed and he started having a little pain near the site so we decided it was time to pull the line and place the broviac. But before we could do that, the Infectious Diseases docs (being extra cautious) wanted us to do a blood culture. Just to be safe. Monday the labs were drawn for that.)

So I head to Walmart and get a voicemail.

"Manny's blood culture was positive. Please call."

You gotta be kidding me! I knew what this meant.

And at that moment in time, I knew that our day had just been derailed. I kept going back and forth between shock, denial and anger. For the next 2 hours, I shopped at Walmart (wasn't going to leave the family with nothing to eat), then packed for the hospital and arranged for hospital plans.

Before I knew it, I was walking in the door and being greeted by the very people I just talked to on Friday. The same place I'd just delivered candy last week.

The transition is so smooth now for admission. Everything is in the computer. The right people know what to do and how to do it. He has an "action plan" in place.

And Manny was hilarious! He was greeting everyone. Saying their names. Being a real joker. I worried that he would freak out ... but he has (sadly) adjusted to his new reality that we live in the hospital OFTEN.

We have no clue how long we will be here but there's a CHANCE this won't be long. There's a CHANCE that it was a false positive and it's just a contaminant. The lab that took the blood only reported "Bacillus" ... which is very very non-specific! It's not helpful in fact at all. It could be "nothing" and if that's the case, we'd be out of here over the weekend even maybe or early next week. (Depends on if they want to replace the PICC or a broviac.) Or it could be a true infection and we're here for the long haul again.

How will we know? They took more blood today. One set of cultures from his PICC line and one from a peripheral site. It takes time to grow this. But we should know by Friday (probably) if this was just a false alarm.

I don't think I've ever prayed for carelessness before. But seriously, that's basically what we're hoping for. We're hoping that the nurse that collected it was careless. Or the lab who ran the blood tests ... maybe someone there was careless. (But trust me, that doesn't give me the warm fuzzies either ... but I will cross that bridge when I get there.)

Since it's been almost a month (We were discharged Dec 28 and today is Jan 25), and he has not been sick, his veins are fairly healthy. They were able to get the IV in on the first stick (that never happens). I'm thankful!

So tonight, I sit in room 222 ... next door to the room we were in last time. (that was 221). Things have gone as smoothly as they possibly can. It's sad that they have a protocol JUST for Manny. But I am also thankful for it. And I'm saddened and thankful that Manny thinks of this as "normal". We both just fell right back in our spot, picking up where we left off, surrounded by friends.

And I'm wondering what I'm supposed to do with our time here. Maybe I'm supposed to "redeem" the time in some kind of special way. I'm praying for specific direction on that.

8pm, walked out of my room for the first time. Went down the hallway to the linen storage cabinet. Mindlessly walked back to my room and opened the door. I was SHOCKED to see it stuffed full of people I didn't recognize. Took me a second to realize, I walked in to room 221 out of sheer habit. I profusely appologized (they were all Hispanic and I'm pretty sure they only spoke Spanish so I think they were a bit confused about who I was!). I then walked to the right room (next door) and started devising a plan of how to make sure I don't do that again! :)

9pm ... my hopes of this just being a contaminant are fading slowly ... we have a fever. Doesn't prove anything, just that this might be real. (ugh)

Business as usual

2012-01-20T23:01:00.000-05:00

Oh my ... just realized it's been 2 weeks and I've not updated. Well, you'll be happy to know that's because we've been busy living life.

After the marathon hospital stay, the scare with the fever, the borderline pneumonia, my broken (and now fixed) tooth, a personal health issue (still unresolved), the stomach bug creeping through the family members (Manny currently has it) ... well, let's just say life is "back to normal".

Manny's PICC line was put in on Dec 23 so we're about to hit that month mark. Some docs will change it out at a month but for him, we're planning to let it go as long as it can. So far, so good.

Today, we went to meet with the Motion Analysis Center (associated with the Muscular Dystrophy Clinic). They are working on getting us a power chair. That is not as easy as it sounds. See, when a chair was first ordered for Manny, he was under hospice care and that did not qualify him for a power chair. Nor did they think he'd ever be able to manage it. But ... things changed with his proper diagnosis. We have had his wheelchair for a year (and we LOVE LOVE it) but insurance won't pay for another chair for at least 2 more years.

They gave us a loaner a while back to see if he could even physically do a power chair. He was AWESOME at it. He was sick as a dog during that time too and still he could master it. Today, after not seeing the chair for almost 2 months, he was getting around everywhere in that chair. He even mastered the 3 point turn (never shown how to do that, just figured it out on his own) and even parallel parking! He's a natural for sure.

So ... do we wait for the 2 years to get a power chair? Or they had another option ... they could try to do used parts and we could self pay. It would still be $2000-3000 roughly (which is high for us considering we're both self employed and I've been in the hospital for the past 4 months and Dan has been playing Mommy and Daddy roles). We might be able to fundraise for it. We might be able to get a donor for it. We could also wait for insurance to come through. We haven't decided yet.

While at the hospital, I decided to visit some of the floors and people we always see at the hospital. (I bought bags and bags of chocolate candy.) I wanted them to see Manny when he is healthy, happy, full of life and feeling good. We got to see basically everyone. Each one had that, "OH NO" look on their faces as we walked in (thinking we were back admitted) so I would quickly say, "Just here for a visit." And hand them the candy.

Remember how I was asked to write up something about some of the mishaps we'd experienced in the hospital and I gave it to the nurse managers? Well, apparently, there was a staff meeting on several of the floors about this letter. I cringed when I heard this! But apparently it was well received, was taken as good feedback and not complaining. (Phew!)

Since this whole experience, I've had TONS of ideas. I want to put together a book or manual or articles or something about how to survive the hospital. In my spare time, I'll get right on that! (But I think it would be helpful.) We'll see if I ever get around to it.

In the meantime though, you know how I wrote a book about Cleft Lip and Palate? Not because I wanted to write a book, but because I couldn't find one about it. Well, I went looking for one for Manny about Muscular Dystrophy or Neuromuscular Disorders. And guess what? I could find ONE. It's many years old and is about a boy with his dog and how they get through a day together. Fine book. Just not what I'm looking for. I want a book to explain to Manny, to the kids, to the kids' school, to neighbors, etc what Manny has and what he deals with medically, socially, emotionally, etc. And it just doesn't exist. I contacted the MDA and they have 3 booklets for kids... she brought them to me today in our meeting to see them. They're fine. Still not what I'm talking about. How are there only 3 booklets and one book about this subject that can be found? (Disclaimer: I'm sure there are more somewhere, I just cannot find them.)

So guess what that means? That's right ... soon there will be a book featuring Manny and Muscular Dystrophy. What's cool is the local MDA service coordinator is very excited about this project and is offering to help us get the word out. Now I just have to pull it all together. (Again, in my spare time.)

Now changing subjects to Kaley ... I last mentioned that she was having some follow up tests to some "funky" test results. The good news is, 2 of the tests came back just fine. (Relief). And there was only one thing still "off". The recommendation is that she go see a GI doc. (I happen to know a few with all this mess with Manny's story.) I will keep you updated on that as we get the results.

Finally, Manny is going to the NIH in Bethesda, MD. They are "THE" premiere diagnostic people for Neuromuscular Disorders. We're scheduled to be seen on Feb 13. And while there, we're going to do some lobbying/advocacy for Cure CMD. I'll be giving a speech at the Social Security Administration and the National Offices of Rare Diseases. So... Manny Goes to Washington!

So like I was saying ... nothing going on around here. Just business as usual. :)

It's been a week

2012-01-05T22:54:00.002-05:00

We have been home for a week now and life is ... busy.

Basically Thursday and Friday were about doing some normal family bonding time things. We spent the days opening presents people had sent, reading the cards, playing the new Wii games, etc.

Saturday, Manny had a fever. It came and went over a few hours. Sunday afternoon, the fever was back. But this time it stuck around. No other symptoms and I know this is a bad sign. I decide to wait 24 hours and see if it gets worse/better. No change.

Monday we headed to the ER. After numerous hours there, Dr. Cartaya (the Hospitalist I mention over and over) wanted us admitted and started on IV antibiotics. He told the ER doc that and then went home for the evening. But by the time the staff could see us, it was a new ER doc who had not gotten that message. He reviewed the initial labs and sent us home saying it was likely a cold or flu or viral thing. (Does that sound familiar? If so, it's what the hospital told us on Dec 1 before calling us back in on Dec 2 with a positive blood culture.)

But I wasn't going to argue. I went home and slept in my bed. And nervously awaited the results.

By Tuesday morning, he had some new symptoms. This assured me that (likely) he did have something viral and was not septic (again). Late wednesday night, one of my friends from the hospital looked up his blood culture and called me saying it was still negative! Yippee. (phew) Strange to feel soooo happy to "just" have the flu.

The next problem was that Tuesday and Wednesday, we were struggling to keep this cold from becoming pneumonia. He's on meds, etc. But his muscles are just so weak that it's difficult for him to clear his secretions/cough. It just kinda hangs out and can fester. We have tons of machines and meds to help with that. So far, so good. I know the signs of respiratory distress and even have machines to monitor it. And he's managing.

Thursday, went to the Primary and she agreed, no need to go to the hospital unless he gets worse. (phew!) I can tell you, I literally had my bag still packed for the hospital and in the trunk. Tonight, I got it out! (Still packed, but in the house now... that's improvement.)

And where do we stand with his feeding? For now, he is still eating via the PICC line ... the vein in his arm. The plan is to keep him on that line until the line stops working. At that point, we will go into the hospital, have it removed, do a blood culture. Wait 3 days and then do the Broviac (the more permanent line in the chest). The 3 days of waiting is to make SURE there is no line infection this time when we put in the more stable line. So we know there will be a hospital stay and surgery in the near future, we just don't know when. Some PICC lines work for weeks, some for months. It's just a wait and see so we can spare as many veins as we can for him.

And I've contacted Shands in Gainesville's GI team again. They are still stumped with no new ideas about tests to do, etc. for getting him back to enteral feedings. Ugh.

Meanwhile, during this week, I'm having a personal health challenge. (And no, I still haven't gotten to the dentist ... working on it.) Because it's of a "personal" nature, I'll just leave it vague and ask for prayers. I could use a healing from the complications and the pain. I do not have health insurance and really do not like the options of the medical way of treating it. But I do need to be able to be healthy enough for my family. They are counting on me.

And the last piece of news for this blog ... while at the doctor's office today for Manny, I asked the primary about Kaley's blood tests. You see, she has a policy of running some basic labs for the 12 year old check up. (Incidentally, that's how we got Jacob's diagnosis last year at his 12 year old check up.) I figured she would have called me if anything was wrong ... but it turned out, there was something wrong with the bloodwork, it just wasn't an emergency and the doc figured a few weeks wouldn't change her outcome.

So ... we're not exactly sure what is going on yet but there were some concerning labs. She gave me the script for more specific tests and we'll be doing those over the next few weeks. I hesitate to share the thoughts at this point until we have more info. But suffice to say, she needs prayers too!

And that brings me to my emotional state. I'm in over my head. You know the stages of grief and loss? Well, I vascilate between denial and anger. I'm so stinking upset. I believe in a God who is full of healings and physical manifestations of that still occurring today. I've SEEEEN it! So what is this? I'm not the paranoid type, yet it seems like an attack on our family. I'ts nuts. And I don't like it. I'm not angry at God, exactly. I'm angry at the whole situation and the "here we go again" feeling.

Sure ... you could tell me that we knew this. Or we signed up for this. Uh, no we didn't. When we adopted Jacob, we knew he was on the autistic spectrum. We knew he'd been exposed to drugs. We had no clue that 12 years later, his kidneys would start to fail. etc etc . And it's no different that a person who births a child, raises them for say 17 years and then finds out they are a drug addict or has some kind of brain tumor. They didn't know that either.

Being a parent (whether it's via birth or adoption) is hard. We sign a blank check. We deal with what comes. And I'm just saying ... that in my life right now, it's all coming at me pretty quickly and I'm getting knocked over by the waves. I still know God is good and God is in charge. I would just like to be able to stand up and catch a breath before the next wave hits. (But that's not happening.)

So ... if you're wondering how we're doing ... we can still use all the prayers you've got.

Ooops

2011-12-29T23:29:00.001-05:00

Ooopps... Guess I left many of you hanging. We did get to take manny home on Wednesday! This is a huge praise report. God is good and faithful and merciful. Never forget that.It is strange to re enter your life after a month. It is amazing how many things you miss out on while life is on hold in the hospital. I am a bit overwhelmed by the generosity that was shown to us... Presents, money, the iPad, visitors, meals, etc. My mother in law even came down foe almost two weeks to cook and clean and help while the kids were on spring break. We couldn't have done it without everyone's help. Regarding manny... This battle is FAR from over. His immediate infection is gone ... Praise God. But the residual effects are still to be determined. Bone marrow suppression/failure is our biggest concern right now... Those are the numbers that are declining... Sigh. We are being followed by a hematologist oncologist. His hemoglobin is dangerously low and dropping as is his hematocrit. What does that mean? I was taught what to watch for and I have my hospital bag still packed. The next battle for him iss the oneida have mentioned several times. We need a reliable, safe source of food for him. With the TPN, we run the risks of more infections like this one and the possibility of running out of viable veins. With feeding him via tube, he runs the risk of heart attack and respiratory failure, etc. So clearly, we Ned a better, safer option. So back to the drawing board. Me? After getting home, I ended ip having a good cry. The terror and trauma that manny and we went through is unimaginable. The wounds are deep and only god can/will heal those, but it will take time, especially considering this is not over. And the othe thing that is troubling me is the sacrifice my other kids are making... It is HUGE. We are spending the days doing fun, family things, building memories, strengthening relationships, cherishing the time. We are taking one day at a time, trying to find the new rhythm of our lives. Manny and I are thrilled to be home and on to our next adventure. We would love for it not to involve the hospital any time soon. (but of course we know that can't be true sinc he will have to have his Piccadilly line replaced eventually and that isn't as easy as that sounds... Will write about it another time.)In the meantime, picture us out having fun, living life. Eternally grateful for all of you.

The discharge hiccup

2011-12-27T22:25:00.001-05:00

What's the latest on us?

I will try to recap.

"My view"... he was in my lap and looked up at me. I snapped this picture.

December 28 will be the14th day of antifungals SINCE the negative blood cultures. The discharge plan is to go home then. But ... on the 26th, they ran the standard weekly CBC required when a patient is on TPN and ...

Let's just say there are some concerning numbers. Several indicators (that have been stable for the whole 2 weeks) are now trending downward. I spent most of the 26th researching what this could mean and if it would impact our departure.

Long story short: Yes. It could.

Today, I talked to Doc and he is concerned too. The nurses were coming up will all sorts of (unplausable) explanations of why/how this could be a false reading. To which Doc said, 'Yes, let's get some sand for our heads.' I asked him point blank if we're going home tomorrow and he said, "I think so... even if it's only for a few days." (Did you all catch that?? Ugh)

Without going into CBC reading 101 class, he is borderline needing a blood transfusion again. I have no problem with him getting one. The question is ... WHY is he needing it? I don't even want to go into all the things that this could indicate ... suffice to say, NONE are good. Among the likely culprits: Infection brewing, sepsis, bone marrow insufficiency. The concerning part is that he was stable for 2 plus weeks and then this sudden drop.

So, in the morning, we're doing the blood test. If the numbers have gone down, we're continuing to be residents of room 221. If the numbers are stable, this is gray area and he'll have to make the call about discharge by involving the Infectious Diseases Doc and the Hematologist. They'll make their best guess as to what is going on and what to do about it. (Some things are chronic, for example, and those shouldn't keep us here.)

But, if by miracle, his numbers have rebounded ... we get to go home. Hopefully for some time.

So, dear ones, we're needing another miracle. As he sleeps tonight, he needs a Godly blood transfusion. To give him all the life sustaining things his body needs to fight whatever this is off. We will know by about 7am and we'll go from there.

I've just been talking with the night nurse who will do the blood draw and should have results before she leaves. If the number has gone down, she will wake me up to tell me. If it's stable or up, I will get to sleep for a few more minutes.

Trying not to let my brain go to anything other than ... he is doing well. he is stable. he is coming home. Let's all chant that together, shall we?

A Perfect Day

2011-12-25T23:43:00.000-05:00

The day was ... perfect.

I guess I didn't have any high expectations of the day, afterall, what can we do for such a short amount of time and a "sick" baby on Christmas day when nothing is open?

The night had been uneventful, just a few times rotating Manny. Then the staff helpers delivered a few toys in the middle of the night. Manny and Kaley opened the few gifts that were given to us by the hospital and we played with them. We did our normal routine of medicines, breathing treatments, etc.

My parents came to visit and brought breakfast.

About noon Dan showed up. I told Manny the plan was to go with Daddy and the kids, have some fun, and then back to the hospital. He immediately cried and said, "Home, no hostipal." I explained again. Same response.

My heart sank as I knew he'd have a blast and then feel crushed that he had to come back here and not stay with Daddy and the kids and go home. But we felt it was worth it anyway. So we went.

He was sooo excited to see the kids, get in his car seat. He was pointing out all the signs along the road. He was even like, "Cooool ... look at the cars". It's truly amazing what you SEE that you didn't see before.

We drove to this little "beach" along Tampa Bay just a few minutes from the hospital. The day was perfect. Sunny. 82 degrees. And we just started to walk. The kids have grown up in Florida and have saltwater in their veins practically. They love the adventure of turning over rocks and finding life, looking for crabs and other creatures. We skipped rocks into the bay.

We walked and ended up at this restaurant on the water and it was open. So we decided it would be our lunch. Quite the view. Food was good. And we just all enjoyed a "normal" moment. And it was at THAT moment, that I started to feel all we've been missing out on. Just how much our lives have been completely on hold. Worth it, of course, but this has been HARD. I only let myself feel that for a split second and I snapped myself out of it. I hadn't realized how "jail-like" this felt. So I couldn't dwell on it.

A couple of times I mentioned to Manny that eventually we would have to go back to the hospital. Each time, his answer was the same, "No hostipal, home."

Eventually it was time to walk back. More adventures along the way. Piled into the car and headed to Burger King to get some ice cream. And we just hung out. Talked. Laughed. All the while realizing the clock was ticking.

That was then (December 23, 1994... 2 days before we were married on the beach)

Happy 17th Anniversary! A perfect way to spend it ... on the beach.

And then it was time.

By now the sun had set and the feeling was very somber. I asked them just to drop us off at the front and not walk us in. As I unloaded the baby out of the van, I was choking back tears. (They flow again as I type this... which is why it's taken me 5 hours to write this since I left them.)

I can't put into words why this is sooo hard.

I'm stuck between two worlds.

And I was dreading what I thought was coming from Manny.

Kaley, Manny and I walked to the front door of the hospital. I carried him and Kaley pushed his wheelchair. We turned around and waved good bye. "See you soon" I said in a chipper voice. Manny started to cry but didn't. Instead, he said, "See you soon, guys."

Up the elevator. Down the hall. Hi to all the nurses. Into our room. No tears.

I felt relief. I have no clue why he was OK with coming back here tonight, but he was. Perhaps that was God's gift of grace to me. We returned him to his hospital clothes, hooked him up to his meds and life resumed at the hospital.

Since he was good and settled, I went into the bathroom and had a good cry. I miss my family so much. I know how hard this is on them. I see it on their faces. They're trying to be brave and strong. I see it in the little details that only a mom notices. They lost sooooo much this past month. And they understand, they get to keep their brother. And they don't even resent him. They think he's worth it too. And I'm in awe of the sacrifice that my little people are willing/able to make at such a young age.

About this time, I get a call from Dan that Zoe is having a hard time. She's refusing to do something that was asked of her. (She has deep, deep "loss" issues and they often manifest in behaviors of defiance and/or anger.) So Dan called me to see if I could talk her down. I could hear her yelling. She got on the phone and I said, "What is going on?!" And she burst into tears, "I MISS YOU!!!" And we wept together. I can't tell you the guilt there is to have her in so much pain. So I put her together with a proverbial bandaid and hope that it will be enough.

I came out of the bathroom and Kaley could tell I'd been crying. She said, "Want to watch a movie with me?" (She NEVER does that.) And I said, "Honey, thanks for being a friend tonight. I'm feeling sad and what I need right now is a friend. Thanks for understanding that." And we watched a movie, ate popcorn and shared a coke. It was just what I needed.

So I started out by saying it was the perfect day. How could THIS be the perfect day? I tell you this: Any day that you get to wake up, get to spend time with those you love ... it's a perfect day. Most people do this every day and think NOTHING of it. But today, I am keenly aware of the amazing GIFT that this is. I got to have 6 hours with my family. And the coolest part? That was just a "down payment" ... I'll get to have them all the time again very soon.

What gifts did YOU receive today? They might not have come wrapped with a bow, but they were important. Make sure you didn't miss any.

You're Listening?

2011-12-24T22:19:00.001-05:00

So it's Saturday night and it hits me ... I haven't updated the blog. Truth is, not a ton happening. (Which is GREAT news by the way.) But there are some things that I can catch you up on.

Friday ... boring, "normal" kind of day. Manny is being "himself" pretty much all the time. Happy, fun, funny, opinionated, social, interactive.

The plan had been to make sure he has an adequate "line" before the IV team leaves for the weekend. So about 5pm, Mani (from the IV team) brings in the equipment to see if she can get a PICC line. That's the one that's in the upper arm and is a central line. This means he can eventually go home and go back to his home feeds. (You can't do that with a peripheral IV line.) Remember back on Monday they tried FIVE times and couldn't get it? Well, she thought she could. So we decided to give it a try.

About 7:30, we headed back. Manny was given a light sedative (versed) and he was still awake and talking but he started being really "loosey-goosey" and even slurring his words! By the end, he was snoring.

But in the middle, God just made it "easy" or something. Because it worked. It was flawless. Easy. After all that torture the other day and then now, drama-free! (Gotta love that.)

Headed back to the room and we had surprise visitors ... Dan, the kids and Grandma. Kaley was there to stay with me again (HER decision). Manny slept through the whole visit.

Today, has been quite uneventful. (Love that). We had visitors bring bears and a Hess truck and bead to Kaley and Manny. (Not sure which group it was but they were here for all the kids in the hospital.)

Somewhere in the afternoon, I noticed most of the kids on our floor have been discharged. We're in a unit that often takes the kids post surgery (and most docs didn't do those near Christmas time).

Then some dear friends, Rich and Elsa, came to visit. They brought veggies for me (yay) and a few toys for Manny. It's always nice to have grown ups to talk to. Just as they were leaving, another visitor came by. Rick ... he's a friend with Rich and Elsa. I've met him once but it's been a while. Apparently, he's been reading the blog. Who knew. And I can't begin to tell you how much it means to know someone is reading and benefiting and being blessed by the blog. We ended up talking about a variety of spiritual topics and before you know it, time had flown. He became that "word fitly spoken" referenced in the book of Proverbs.

Sometimes I feel like I'm just typing these things so I have a way to express what I'm feeling/experiencing. It helps keep my details straight and even helps me to go back over it later to remember it DID happen. (Otherwise it seems like a bad dream sometimes.) But to know that people are actually reading, well... it's quite humbling. I feel like these are the random ramblings of a tired lady who is just trying to put one foot in front of the other most days.

There are times I'm feeling triumphant. Other times it's distraught. Sometimes I'm completely overwhelmed. Other times, it's victorious. And there are times I feel like all those simultaneously.

I always wonder if I'm "over sharing" (where it's just too much... yes, I know bloggers like that.) or "under sharing" (where you are lost because I haven't told enough relevant details). But mostly, I am not considering my reader (ooops, how's that for blunt?) I'm just writing.

So I guess it's time I thanked you. If you're a reader of my "reflections" ... thanks. Thanks for hanging in there with me through the thick and thin. For being faithful to raise us up in prayer (Like Aaron and Hur did for Moses ... and no, not comparing myself with Moses). For the comments of encouragement you leave me. For listening.

Right now ... we're in a "semi-safe" place again with Manny. We can almost breathe again. (Though it's been almost scary to exhale.) We're in a time of regrouping and wondering what the next steps are. (I should know more Monday about the time line from here now that we have a line.)

And I'm trying not to think beyond one day at a time.

Manny's Fun Day

2011-12-22T18:42:00.000-05:00

The night was uneventful. Just about 6 times of turning him. No drama.

My mom and dad came by with some breakfast and to visit. (Always nice to have adults to talk with!) They hung out until it was lunchtime and I grabbed some food for lunch/dinner. Since Kaley isn't here for me to leave easily, I thought I'd get food while I had the chance.

Julie, the music lady, came for another play date.

Then the Child Life lady asked if we wanted to play BINGO by watching on channel 14. Sure, why not? But unfortunately, we don't get that channel. Oh well. About an hour later, they showed up and said that Manny won anyway. He got a new remote controlled bulldozer.

AND they had a raffle of all the kids playing and Manny was the winner of the Grand Prize! A HUGE teddy bear which he named Joe. This thing is bigger than he is for sure!

Then it was time for PlayDoh. I think this last one could be an Ad for PlayDoh!

I'm having people ask if these pics are really showing Manny feeling better. And yes, he's HIMSELF! He's back 99% I'd say. No longer sick. No grumpy. Easy to get along with. Cooperative. Learning. Playing. You know, "Manny".

How's THAT for a miracle?

Got an answer to prayer

2011-12-21T22:02:00.000-05:00

Gotta love how prayers are answered in direct, quick ways. I went to bed last night wondering which way to go regarding Manny's IV versus PICC versus Broviac issue.

By the time Manny went to bed, his arm was hurting at the IV site and starting to swell. But the way he is with IVs, we don't pull them unless absolutely necessary. We figured it would last until morning. But by 3am, it was clear, he was in a lot of pain. They turned off the fluids going into his arm and called the doc.

At 5am, he had been up so many times crying in pain, that they pulled the IV and took a blood glucose just to make sure he doesn't plummet (like last time) and it was fine. At 8am, it was sinking. By 9:30, it was quite low so they called the IV team to do an emergency IV line. (PICCs aren't done until the afternoon usually around here and he couldn't wait that long.)

IV got in ... eventually.

So by the time the docs rounded today, we were discussing the option of skipping the PICC altogether. Instead, we will try to do the Broviac next Monday or Tuesday. (That way, he'll be at the very tail end of his treatment and the least likely to get reinfected.)

So now we wait to see if it can hang in there or not with his IVs. The longer we can go, the better.

Tonight, the kids, Dan and Dan's Mom Came by. She brought me some homemade stew and a nice salad. (Yum). The kids had fun playing the Manny's toys! And at the end, I sent Kaley home with them. She was TORN, oh so torn about staying or going. So I ended up pushing her to go. (Even still she was still torn.) But I know how much good it will do her, even though MY life gets harder. She needs to get out of these 4 walls. She needs to run and play and have some fun. She needs to get frush air and sunshine. She needs to hug on her cats, feed her lizard, sleep without a baby crying and machines beeping and noisy nurses. She deserves a life outside of the hospital. I HAVE to be here, she doesn't. But even still, she cried on the way down the hallway. She'll be fine. And she made Daddy promise he'd bring her back on Friday.

I miss her already.

I have wondered why we have been granted all this "special" time together. We've certainly bonded in a special and unique way. I often wonder what will come of these past 4 months where we have spent more time IN the hospital than OUT of the hospital. I did the math ... 68 days IN the hospital and 53 days OUT of the hospital since September ... and for November, we were only in the hospital for 4 days so that tells you how long our stretches are. And she has been with me for MOST of those days.

I'm thankful for the amazing, beautiful, funny, caring, loving, gifted daughter that God has granted to me. She is certainly a special gift, a real blessing.

So here's hoping that tonight is uneventful. That we're able to get a decent night sleep. Afterall, I'm tired, feverish, still have that very sore throat and am feeling every bone in my body. Both my mother and mother in law have offered to come stay with him... and even though it's tempting, THIS is where I need to be. I've just caught too many things that put his life in jeopardy to feel safe leaving. Maybe I just have a "savior" complex or an over inflated view of what I am doing ... maybe I need to let go of some of the control. But the truth is ... I also don't feel a "release" to be able to leave him.

And besides, if I went home, I'd just find children who need parenting, clothes that need washing, dishes that need to be done, work, work, work. It would be VERY hard not to jump right in to housework and trying to catch up on what I've missed for the past almost month we've been here. Soo ... might as well stay put.

No PICC, need a plan

2011-12-20T22:06:00.001-05:00

Monday was the official day that said he's "clear" of the yeast and bacteria in his blood. They've had only hand IVs during the past week or so. This is because if we introduced another central line, the remaining yeasts would have found it and set up house again on it. So they went with peripheral lines instead. Problem is ... those only last so long, especially if PPN (Similar to TPN) is going through the veins.

On the 13th, we got two GREAT IVs started and by miracle, they lasted. Well, the right one started showing troubles late on Friday so we stopped using it. Which puts extra pressure on the left hand.

By Monday, he was in severe pain from the IV on the right and they pulled it. His hand was swollen, had a cut on it from the catheter, etc. It was time for that sucker to come out.

So now that only left us with one IV ... one that is over a week old and has had PPN constantly. So it's just a matter of time until it blows. They called the infectious diseases doc to see if we could get a PICC (that's the one in the upper arm that can last about a month or so). And she said yes.

About 4pm, the IV team has us go down for the PICC placement.

Long story short, by about 7pm, we were headed back to the room with no PICC.

What happened? His veins are "sick". Apparently, there is literature that shows antimicrobials and antifungals can cause veins to go hypotonic and not hold. Sepsis also does a number on your veins as well. Throw in that he's already a VERY difficult stick and that he's been in the hospital for almost a month (needing frequent blood draws), there were very few viable veins.

But the team tried. They gave versed and let me stay in the room to keep him calm. For each attempt at a PICC line (starts with a large needle), they gave a shot of lidocane. By the end, he'd had 5 shots of lidocane, 5 attempts at a PICC (3 on one arm and 2 on the other) and they decided he'd had enough. Within seconds of getting into the vein, it would clot off. One trouble after the other. The IV ladies were just sickened that they couldn't get it ... but I know they did their darndest! If I'd not been in the room, I might have wondered ... but I SAW it with my own eyes.

Kids visiting Manny's Ipad, er .. I mean visiting Manny!

So what's the plan from here? Wednesday they will probably try again for a PICC. If they can get it, we might even be able to go home on Friday or Saturday with IV antibiotics. If not, then we'll have to wait until the end of his treatment and then get his broviac placed on Monday and go home Tuesday.

And truthfully, I'm torn about the whole thing. With the PICC, we go home sooner but have to come back in about a month for a broviac then. But with the Broviac, we only have to be here a few extra days and don't have to come back in a month. Praying for wisdom on that whole thing since there's no way I could possibly know which is the "better" option. Either way, they say we will have a couple hour "Day Pass" on Sunday to leave the hospital and spend time with family.

Today (Tuesday), he's been very scared any time the door opens to our room. He cries until he sees who it is. There are people he knows never hurt him (like Doc and Carmen, the cleaning lady). But everyone else sets him off. He cries until they prove themselves not scary or they leave. (Sooo not like him.) The ones that try to win him over by trying to talk to him actually succeed. Those who patronize him (Like "You're fine." or "I'm not hurting you.") just continue to get the screams. I'm sorry for all the trauma he's been through.

And me? People wonder how I'm holding up? Truthfully ... I'm hanging in there but by the skin of my teeth. Like I am sleeping but wake up sore. I got my heating pad from home but it's not helping. I woke up this morning with my knee so "twisted" feeling that I couldn't put pressure on it for most of the day. Tonight it's just a bit sore. (I've never injured this knee so who knows where this came from.) I'm eating decently but feel like I've gained tons of weight. (I've never been a "scale" person ... but go by how my clothes feel and they're getting tight.) Just makes me feel uncomfortable. My tooth is still not fixed ... I have an offer of a dentist to help me but just haven't been able to leave here long enough to do it. Seems that every day he has a procedure where I have to be there.

Then this afternoon, I noticed I felt a bit hot and sure enough, a low grade fever. Sore throat. Headache. Drinking tons of water, eating fresh oranges, taking my vitamins but still ... we're in a hospital surrounded by very sick kids. I talked to the doc about it and he felt like there was nothing that could be done about it since anything I have Manny has already been exposed to anyway. So no need for me to leave.

Tonight, the fever is already gone and the rest I think will be better with a good night sleep. (Hoping that happens.) Amazing all the way stress manifests itself in a body, even when you THINK you're doing a decent job of controlling it.

Another concern for the night is ... his one IV he has left is on it's last leg. It's on day 8 and it's starting to show signs of phlebitis. It hurts when it's moved or flushed. Hopefully it can last the night. Because if not, they have to try an IV stick in the middle of the night without the aid of the IV team. (shiver). Even the night nurse is sending up prayers for this IV tonight I think.

One way or the other, we have to have another line tomorrow. New IV, maybe a PICC. Still rethinking what will be the best idea.

Now What?

2011-12-17T23:23:00.000-05:00

Reflecting today again ... God has saved this baby's life! I'll go into details and specifics and statistics later time but it seems like the baby is out of the woods. We have a long way to go back to his "normal" plus a lot of unfinished questions ... like long term kidney/liver/gall bladder/bone marrow issues? And how to avoid this in the future? and Isn't there another way for him to eat that's not so dangerous?

But for tonight, I sit and watch the little miracle sleep. God is certainly to be praised. There are numerous Doctors who made the right calls at the right time. All adding up to the right decisions. There are hero blood/plasma donors who gave the gift of life. There have been encouraging folks with the word fitly spoken at the right time. All are miracles in our life.

And while this hospital stay is far from over ... I now believe that he will, indeed, come home with me at the end of this stay. (There was doubt for a time... and I know some of you might say, "I never doubted" ... but trust me, he's ONLY here because God wasn't ready for him yet.)

And the pain... oh the pain he has endured.

And my heart ... my body, mind and spirit are still traumatized by the decisions I've had to make over the past few weeks. Some of the words I've heard. Some of the details (still too painful and raw to put out there).

But here's one I'm finally able to write for the first time. Remember the day last Tuesday when he was rushed by "rapid response" (a step below code blue) to the ICU? Remember how he was frothing from the mouth, was basically unconscious and yet still screaming? Remember how his blood pressure bottomed out?

Well, the blood pressure basically went to Zero. And the term they used was, "Fluid Resuscitate". Isn't that a crazy, scary term? I heard it and my knees buckled under me as they whisked him away from me to ICU. It was at that exact moment in time that I got a text from a friend that said, "I'm on my knees" and I texted back, "My knees just buckled". They pumped him so full of fluid to get his body going again. (Thus the extra 7 pounds and the eventual need for the chest tube.) They were afraid to sedate him in any way because it would lower the blood pressure even further. They could only give certain pain meds for the same reason.

He was hanging on by a thread. And the thousands of prayers going up for him around the world.

And God heard every one.

And as he sat in his wheel chair today, playing, basically back to himself ... I wonder what it was all about. What the heck? Why did he have to go through this? Are there lessons to be learned? (If so, hope I learned them!)

Mostly I think God is supposed to get glory out of this somehow. And I'm not sure how to do that well enough. He deserves the biggest Praise Party there ever was. For He alone restored Manny to health (through various means). I wonder if I'm telling the story well. I'm wondering if He is proud of the way we are going through this? I wonder if I'm missing the point entirely.

And I wonder "what's next?" I'm sure that sounds like a huge lack of faith. But from my perspective, it's learned conditioning. Afterall, do you know how many days we've been in the hospital versus home since September?? I'll let you guys all guess before I say the answer. (A lot). Every time we go home, we have the expectation that THIS time will be different. THIS time they fixed the problem.

This last time was going so well that we actually bought tickets for out of state for Winter break. (Refundable, thankfully.) We had this "Life is going well so let's go live it" philosophy. And this particular episode has me a little on edge. I'm not sure how to settle back into "normal" life again. I think part of me will always be looking over my shoulder, waiting for the other shoe to fall. Afterall, he still has an underlying terminal condition that we know about... and a progressive condition that is still unnamed.

Eating via the veins can do this again. We can end up right back here.
Eating via his tube can end up with multiple complications (heart attack, respiratory failure, pneumonia)
So I'm left with the question of: NOW WHAT??

I'm sure I'll eventually settle back in and life will pick up its crazy pace and I won't have such time for reflection as I do here. But THIS is my biggest concern right now. I've never been the kind of person to life half-heartedly and I'm not about to start now. But I can say, I might take the first few steps out of the block a little more gingerly than I normally do.

What's my point of this rambling? I'm not sure where we go from here. All I know is I want to tell Manny's story well. I want there to be an amazing story to tell. I don't want to miss one second of this journey.

And I want God to be proud of us both.

That's what I want.

Reflections and Photos

2011-12-16T20:25:00.003-05:00

Some days are "easy". It's those days that I do the most reflecting and processing.

On the very hard days, I put my emotions to the side and make the best judgment call that I can. I gather the best facts that I can and do what has to be done. Those days are long and exhausting.

But on the quiet days, when very few procedures are being done and we're just "waiting", I let myself FEEL it all. It's then that I try to process the events. And it's all just so overwhelming.

As I reflect back on the tortures I've let him endure, the pain is unbearable. Knowing that *I* did this to him. He looks to me to protect him. And some days, I feel like I'm failing him. Like just to get one blood draw out of him, it takes the IV team (the best of the best who know and love him well) numerous sticks in "owie" places just to get anything. And even then, it's torture. 1 hour is nothing for a blood draw.

Then I get really protective of him emotionally. The last 2 days, he is "Over it!" He's very kind and friendly to Carmen, the cleaning lady. He's friendly to the 2 docs he sees daily. He's fine with some of the nurses, respiratory therapists and techs but others just kinda ram-rod the whole thing and he screams the whole time. Which makes them say, "You're OK." and other similar phrases. To which he has to prove he is NOT. He screams "I mad!!!" at them.

And as these people try to tell him to "get over it", I am biting my tongue. (You have no clue how hard that is some times!) I want to tell THEM to go through all he's gone through the past 2 plus weeks and see if they would be (mostly) friendly or if they'd be curled up in a ball in the corner!

The ones with compassion are Manny's best friend ... and then he doesn't give them grief. The ones who are trite with him, he makes them pay. Part of me is secretly proud of him for being smart enough to differentiate.

I try not to recount the number of pokes and procedures I've them do to him. I think that's the part that gets me the most. He continues to suffer.

I am pretty sure, however, that there is a LOT more joy than suffering in his life. If ever that balance tips the other way ... well, I'll have to figure out how to cope with that then. For now, I try to make that little boy smile and laugh as much as possible. I try to feed that hungry mind and protect his sensitive heart. I try to nurture his healing. And I THINK he understands that.

So as a "reward" for reading this "heavy" post, here's just a few shots of Manny ... all taken with his ipad. Enjoy!

CHEESE

"I Happy"

"I sad"

First Self-shot!

Wanted one with Mama (he leaned over to make our heads touch) awww

tuckered out after a hard day of playing

Wed/Thur

2011-12-15T22:10:00.000-05:00

Wednesday was a (relatively) uneventful day. So I'll just include the details today on Thursay and combine the days.

Overall status:
He is still stable.
Has only low grade fever. (Good sign)
Has all positive blood cultures still.
His urine culture is now negative (first one was positive).
His gall bladder and kidney look different than they did in September. (They're not sure what to make of it.)

They have to do a blood stick every day until 3 come back negative. (We have 0 so far.) This is becoming more and more of a challenge so the IV team is the only one who comes now. They think "big picture" and try to save the veins, not just "get blood" (as most do).

Because we don't know where the second "seeding" area for the infection is, they are having to do a system by system check. Wednesday they had an opthamologic exam to look for fungus. Before the doc arrived, they had to do 3 sets of eye dilation drops and sit in a dark room for an hour. (No pre numbing drops!) He did amazingly well. And when it came time for the exam, I thought for sure he'd fight her like he had cemented shut eyes. But before she got here, we practiced, let him know it was just a bright light and no more owies. This child did AMAZINGLY well!! It was shocking how cooperative he was.

And the good news: nothing wrong with the eyes.

He is finally down to his original weight and slightly under. He's on 1/2 calories of usual so I'm expecting him to lose a lot more. Why half? He normally has TPN plus lipids. They have stopped the lipids because that's something the yeasts THRIVE on apparently.

Today I asked his hospitalist a question. It's been brewing in my mind. OK you know how he has c-diff and even if he isn't currently showing symptoms and has been treated, he will show positive forever. I wondered: Is it possible he will always show positive for yeasts? Doc said no. It HAS to get cleared or you die. Pure and simple. We have this yeast all over our bodies and it might cause a slight irritation. But in the blood, it is fatal if not treated. Now he's been being treated this whole time. It's just being effective yet.

For now, Manny is (mostly) himself and is playing happily (most of the time, just gets grumpy easier than normal). He is loving his ipad! Even with both of his hands taped down on iv boards, he's able to manipulate it. It's truly amazing how intuitive these games are that a 2 year old, who has never seen it before, who has low mobility and limited use of hands can perform the tasks.

1pm Thursday: Music therapist came by. Manny cried when she arrived and again when she left. In between, he had a fun time. She was great about letting him touch all the instruments and picking the songs.

Do you notice he's playing with his ipad? Even with 2 IV boards, he can play this thing! And Kaley? Would anyone else like to vote with me for "World's Best Big Sister?" She deserves an award for sure!

More tests

2011-12-14T09:15:00.001-05:00

Tuesday: There MIGHT be some slight good news this morning. His labs are staying stable (mostly) for starters. And regarding blood cultures: For a few days they were all negative, then yesterday we were told they were positive again but not specifically told where. Today, it got clarified that his peripherals are negative and his central line is positive.

For those of you who didn't go to medical school or live in the hospital for months now, I'll explain. There are several types of lines that are considered "central lines" (PICC, in the arm; Broviac, in the chest: Central Vein line, in veins like the femoral, etc.) Those can receive medicines, TPN and blood products in ...but they can also have blood taken out. The perpherials are the traditional IVs.

My understanding is that the central line can be infected in a localized way or the whole body can have diffuse infection. On December 1, the central line was positive but peripherals were negative. Then both became infected.

So the semi-good news is that it's not to the peripheral sites (as of 3 days ago).

1pm, they put in 2 new peripheral IVs (one in each hand ... so he can use neither hand). And in a little while, they will pull his Central line. Eventually (not sure how long) they will have to put in another central line for meds, TPN, etc.

So ... we're hoping the infection is only localized and not diffuse. And we're hoping that they are pulling it soon enough this time (versus last time when it was very late and he had to get stable before it could be pulled).

I'm just not sure how much physical and emotional reserve either of us have left.

2pm Zoe's surgeon, Dr. Ricalde, stopped by to discuss my tooth. I'd emailed her the other day for a personal recommendation (afterall, she went to dental school). She discussed the options and clarified what I was looking for. I told her that I just had no extra emotional capacity to make decisions right now so I needed help. She was very, very helpful. She said she'd write an email to her personal dentist/friend and explain the situation. He'll do just what we discussed and get me in/out. (Wow! I have cool friends.)

3pm The infectious diseases doc ran up to the nurses station and said Manny's urine culture is growing bacteria. They needed another sample. (This involves a catheter... ::shiver::). This is especially necessary since his left kidney looks "Suspicious". (Will clarify that further today.)

4pm, he cried and cried. Grumpy. Couldn't be comforted. I let him nap. (Knowing that would be a problem tonight when it came time to sleep and he didn't want to.) But he needed it!

7pm, a knock at the door. It's Mrs. Ryan. She was Kaley's 4th grade teacher and is currently Sam's teacher. LOVE LOVE her. She's beyond awesome. She "gets it". If every classroom in the world had her, we'd have a lot less problems in the educational system I'm telling ya. Like every year, it's amazing how she ends up with the most well behaved students, do the best on the tests, love school, etc. What are the odds of THAT with a random system?

Anyway, it certainly boosted Kaley's spirits to see her as well. She was showing off the things she's been doing in this room. What a nice surprise!

9pm They took out the Central Vein Line (the one in the upper groin). Oh my. First, there were 4 people in here ... mostly people who were being oriented to a new job here. (They asked first and I said, "If he has to go through this, might as well let people learn from it.") Once they got to the CVL itself, it came right out, no problem. But up until thern, there was a ton of tape and "dressing". His skin was completely raw under it. They call it "skin breakdown". Now remember, this is an area about 5"x5" IN his diaper area.

10:30pm, Manny is still wide awake. He's discovered the talking tom app where it repeats what you say. He has the funniest conversations with this thing. He also loves bopping it on the head and making it fall down! Manny cackles. Then we found a talking robot app and Manny was in heaven.

He had a very restless sleep. He just couldn't get comfortable. And he's very whiny. (After all he went through, just in Tuesday alone, would make most adults curl up in the fetal position and suck their thumbs.)

Wednesday: 8am, he was up, awake and happy again.

Me? I find myself conserving physical and emotional energy. I'm not sure how long these reserves are supposed to last. I'm quite shell shocked by the events of last week. This time last week we were discussing putting him on a ventilator and I knew that likely meant permanent life support. I'm thankful we didn't have to do that. But I can't begin to express the emotional toll the week in ICU took.

So I'm not as "chatty" as usual; just trying to save my energy for Round 2.

Here we go AGAIN!

2011-12-12T22:32:00.002-05:00

Our first night out of ICU was fairly unevenful. Except at 2am. He woke up choking pretty horribly and when I ran over to suction him out, he was covered in poop and burning up!~ (Makes me wonder when the nurse had last checked him.)

9am, infectious diseases doc gave me the news. His blood cultures had been "yeast free" for several days. BUT the last two are now positive again.

What does that mean? Between the positive tests and the fevers ... means we have a new infection. The old one was cleared and now we have a whole new one. We're starting over.

On Dec 1, he had a low grade fever, and then ended up with blood cultures.
We are at square again ... except this time, he's weak.

There are a couple of common locations for this infection to settle but based on hints, they are going to check his heart with echo, an ultrasound of his liver/gallbladder/spleen, etc. and likely a bone marrow biopsy.

They are also going to pull his central vein line(CVL) (it's the "IV" like thing he has in his upper groin). It's a possible source of infection. As I type this, the docs are having a pow-wow about which type of line to reinsert. (There's some debate among them about the risk/benefits of each line.)

8:30 Monday night: The ultrasound of the liver, etc was done as was the echo of the heart (awaiting test results but don't think that's the problem).

The CVL line was not pulled today. Why? The docs couldn't decide on which type of line to replace it with. Everything is a risk/benefit. They had a pow-wow on what to do. I should know in the morning.

Manny is still feeling a bit perky. He's happy and hanging in there. But I could definitely tell he's starting to decline again.

The good news? The nurse for the day LOVES us and she passed on a great report to the night nurse. I think she is going to take good care of us! I think I can sleep a little more peacefully tonight knowing someone is "standing guard" again.

Me? Today when I got the news of the new infection, my heart sank. Ever heard the term "heart sick?" Today I felt it. I am weary. Manny has been terrorized. I thought it was virtually over and that we were going to be on the mend from here. So it was like a rug being pulled from me to know we are right back where we started. I am shell shocked and numb. Putting one foot in front of the other. And I'm finding it "heavy" to breathe.

I've never lost faith or hope. But it doesn't mean we don't have scars. I look at all the holes and scars on Manny's body. (Some are still fresh, open wounds.) And if we could only see emotional scars, I think we'd all be completely covered in just the same way.

Many people got the news that Manny was starting to improve and have now moved on to new things. But the truth is ... he is needing the prayers now just as much as he was last week. So please hang in there with us for the long haul!

Housekeeping items:
1) Yes, you can still contribute to the ipad ... goredan@hotmail.com if you want to paypal it. (The total price is still not covered yet.)
2) We still want people to send pics of people who are praying for Manny. You can send them to goredan@hotmail.com too. I'm filling the wall with them!
3) Some people were wanting the address for the hospital again for cards and gifts, so here goes
St Joseph Children's Hospital
Manuel Gore
3001 W Martin Luther King Jr Blvd
Tampa, FL 33607

Bye Bye ICU

2011-12-11T22:46:00.001-05:00

Today was quite busy... We MOVED!

He was stable enough, he got to move from the ICU. Most of the day we were just hanging around waiting for the "go". (We knew we were leaving at 8am and we didn't leave until 3:30pm ... we're on hospital time you know.)

But while we waited, my Mom and Sister came again to visit. Manny was playing some, sleeping some.

After they left, I sorta took the time to start letting myself "feel" what we've just been through. I could only do it for a few seconds and then I had to shut it down again as the pain is just still too raw and real.

I leaned over Manny (thinking he was asleep) and whispered, "Thank you for staying with me." And he whispered back "You're welcome". Tears fell.

One by one the docs came in and "cleared" us to go to the regular part of the hospital. The hematology doc is very quiet and soft spoken. He was very concerned a few days ago about the bone marrow. Sometimes, certain infections like this can trigger a process by which the bone marrow attacks itself (similar to a leukemia known as myeloid). His body is producing multiple myelocytes and megamyelocytes ... not a good sign. (Even still, it is.) So I point blank asked him if he thinks this will reverse itself once the infection clears or if we'll have to do follow up treatments. He said he isn't sure but he HOPES it's all going to go back to normal later. (I like that.)

A few minutes after we moved rooms, Dan and the kids came (Well, not Sam and Jacob as they are a bit under the weather and we can't risk Manny getting it.) Kaley is now staying with me again (she is very very excited). I took the opportunity of Dan being here to run across the street to the Walgreens for a couple of things. I was gone like 20 minutes. (First time out of the hospital since I got here 10 days ago.)

Now we're all settled in our room (which is ironically, the EXACT same room Zoe was in 6 weeks ago after her bone graft). Love this section of the hospital which has it's own shower in the room, access to a refrigerator, etc. Feels like "home" (Sad, isn't it?)

Manny got to see his Ipad for a few minutes today as he was strong enough to sit for a few minutes. He's restricted to bed rest so he couldn't go in his wheel chair (he didn't want to anyway). That's where he'll really get to play.

And yes, there's still time to donate towards the cost of the Ipad. (Like I said, someone fronted the money to pay for it so he could have it during his long recovery.) We have about half of the money donated already as people are very kind and generous. One family is about to travel for China and is short some of their money but still ended up donatng $5 because Manny's story has touched their hearts. I'm grateful for the wonderful generosity.

During this time of year, my husband and I always watch "It's a Wonderful Life." Over the past few days, I've been reflecting on this concept as it relates to Manny. I can only imagine the hole that would be left (not just in our lives) in the lives of many if he'd never been around. I bet it would BLOW us away if we could see all the people around the world who know of him, who pray for him, who adore him.

He truly does have a Wonderful Life.

Great news finally

2011-12-10T23:50:00.001-05:00

GOOD NEWS! the first good news that we've had.

All through the night, he just seemed "off". I thought it was about the chest tube filling with liquid by being blocked but apparently, it was the chest tube itself bothering him.

The nurse did a fabulous job of caring for him last night and I slept for an hour here and there. By morning, he was no longer struggling to breathe. We took him off oxygen and I was concerned as his breathing got "funky" but it eventually settled.

The docs came in one by one delivering GOOD news! He got more platelets today. The Hematology Doc thinks that his bone marrow MIGHT just turn around after all the inflamation is gone. (I haven't really discussed this but Manny's bone marrow got all wacky... he is having myelocytes and metamyelocytes. It's related to a leukemia that may have been triggered. NOT saying he has Leukemia... but his body is fighting like it does. Sometimes this is reversed on it's own and other times it needs intervention ... only time will tell.)

Infectious Diseases doc says the blood cultures are STILL negative!

The CRP (C-reactive protein) is down from 18 to 5. (It should be under 1 but we're getting there.)
The chest xray showed no more pulmonary edema (pooling) but showed diffuse "wetness" which is likely the start of pneumonias ... but we're not going to let THAT take root.

In fact, his chest xray was so great, they took out the chest xray. I got to assist. A bit creepy if you ask me but I think I could be a surgical nurse/doc so it didn't bother me until I saw his face. (Grimace). I told Dan about it and that he would have likely fainted ... he agreed!

He is doing so much better that he is likely going to move back to a "regular" room on Sunday! Yay.

And he's waking up and starting to be himself!

We had a steady stream of visitors all day. First Penny ... a wonderful grandmother of several and friend to many. She brought me "stuff" (like cream, socks, drinks, food, etc) And mostly she gave me the gift of her time. I am sure it was hard on some level to be in that room as she lost her husband about a year ago. She's amazing! (She doesn't think so.)

Then Connie and Austin from our church came by. She's a wonderful mother to Austin, a special needs 21 year old. She hung out for a while to help when Dan and the kids came by.

Only 3 in the room at a time. And in the ICU, they don't want kids under 12. So Kaley and Jacob are fine but the others are not. But they let them in anyway on my word that they would be quiet, respectful, etc. (And they were of course.) So I took 2 kids in at a time and Dan hung out in the waiting room. Then we switched so he could go in while I washed Zoe's hair in the restroom sink (it was sticky!!). It was nice to see them again ... hadn't seen them in a week!

Tonight, he felt well enough that we let him sit up and play for about 4 minutes after his sponge bath. He loved it. He fatigued very easily because he's very weak but it did a Mama's heart good to see it. His words are coming back. His personality is coming back. The nurses are cracking up at him again.

And right at bedtime, I had the ipad FINALLY set up and ready to go (only took all day... thus no blog entry yet). I have a feeling this is going to be his favorite toy! I will certainly take pics of him using it once he's sitting in his wheelchair and can manipulate it.

Thanks to all the wonderful generosity ... we already have about half of it paid for. You might be wondering if it's too late to contribute ... no. We already have it because a generous friend fronted the money and we're just paying back the debt. So there is still time to contribute to his Ipad if you want. I'll take plenty of pictures of him enjoying it.

Ipad and changing nurses

2011-12-09T22:47:00.001-05:00

First things first. Today, my friends Val and Tara went shopping for me/our family. They bought a few presents with money that anonymous people had donated. They did such a great job of picking out things the kids will love! And there is no way to ever express the gratefulness of people's outpouring of love towards us (most have never met us).

We all wanted to do something extra special for Manny. I'd been thinking about an Ipad for him (many of the merosin kids have it since it's so light and easy to manipulate). And we came up with an idea.

So many people want to do "something" ... to help in some kind of way. I think this is a perfect gift for him even while in the hospital so as he wakes up, I hope to have his ipad all set up and ready to go (I no clue what I'm doing).

If you would like to put a few dollars towards helping Manny get an ipad, you can paypal it to me. Just know that every penny will go towards this great gift for him. (goredan@hotmail.com). And don't feel like you have to contribute, just giving people a chance to do "something" for him.

About today:

Manny did AMAZINGLY well today. He's no where near "himself" but he actually sorta woke up. At one point he was looking at Mickey mouse and he said, "2" ... sure enough, that was the answer.

He's been sleeping most of the day but it's been a restful sleep for the most part. His breathing has been amazing. His chest tube has drained almost 200 ccs fluid in the past 30 hours. (A lot for pediatrics.)

He was doing so well they started taking him off oxygen. I had a feeling he would show the signs of respiratory distress and his 02 would crash as I know he's not ready to be off oxygen. But to my shock, he had respiratory distress but the 02 stayed high. And now we're in a gray area. The new night nurse doesn't know me yet (this all happened at change of shift). But Manny looks horrible. He's starting to act the way he did before his chest tube yesterday.

My theories? His chest tube is out of place or blocked. The nurse doesn't think so.

We aggressively suctioned him (which helped some) but I'm concerned.

The nurse (thankfully) called the doc and we have a plan in place. He's back on oxygen to start with (and that's huge). Earlier in the day he'd been trying to get the canula off ... but when we put it back on, he didn't even object.

After about an hour, he stopped grunting, retracting and looking generally "sick". (He never stopped nasal flaring.) And the strange part ... he was at 100% oxygen basically this whole time.

I didn't really click with this ICU nurse. She's fine and all but I just had this weird feeling. Couldn't place my finger on it though. I started facebook chatting with one friend that's a nurse and one that's had a kid in ICU and septic. Many ideas batted around but nothing felt like just the right solution on how to handle Manny.

I walked out of the room to use the restroom and she asked how he was doing. I explained again how he was still having some respiratory distress, etc. and she said that we'd have his chest xray done by 4am (It was 1am at the time). And I felt comfortable with that. He was declining a bit but nothing that would be a trouble in the next 3 hours.

But then the best thing happened. (God likes to flex His muscles sometimes I think in small ways too.) And she said, we're overstaffed and I'm on overtime so I am the one being cut. I was like THANK YOU LORD. It was the solution that I needed. She's probably an excellent nurse but somehow she wasn't getting it.

In walks Amanda. Oh my what an angel on earth. She's beautiful and kind and sweet and soft spoken. She immediately asked what is going on and I told her and she "got it". (Phew) I knew that she would "stand guard" for him (with the other nurse I wasn't sure so I felt I might have to stay up to watch him).

So after a bath and thorough assessment, we did all we could to make him comfortable. And I crashed. By then it was almost 2am and I hadn't been asleep yet. But I was breathing easier knowing she was there. And he was her only patient. (Another wahoo).

About 4:30 they came in for chest xray and they have to wake me up for that to either put on lead or leave the room. She gave a report about how he'd been doing ... mostly good. And she took care of several problems (Didn't know it was happening, it didn't even wake me up because she was Johnny on the spot!)

About 6am he had a 'blow out' diaper. It's a problem because he has a femoral vein central line (it's in the diaper area) so the whole thing had to be changed out. (Clearly a Mom and a nurse were not consulted on the placement of that line with a kid with c-diff!) So the dressing keeps having to be changed ... often. But while doing that, she told me of more (slight) problems he'd had with breathing and she took care of them.

Thank You, Lord for sending me Amanda last night!

And the coolest part? Last night during all of this, every time he'd be awakened, he was alert and starting to talk. He was actually interacting with her. Answering her questions. He even wanted to hold a toy (first time since Monday for any of this). He was flirting a bit I think! I have so much hope that he'll be more alert today again.

So ... this morning, I wake up at 7:30 to the new day nurse coming in hanging more platelets. They're still concerned about the levels. The chest xray is back but there's no report so the nurse hesitates to share her opinion of it. (I still think it's out of place or blocked or something ... but hoping to be wrong.) Doc will be by in a little bit to discuss next steps.

The things that need to be addressed this morning ... chest tube, breathing issues and his continued need for oxygen.

History and Happy Pics

2011-12-08T23:24:00.001-05:00

Thought I'd do some quick updating for those who are new to the blog. Dan and I will have been married 17 years on Christmas Day. (That's right, we got married on December 25). We have 6 kids. All adopted. All special needs of varying degrees. Ages 2,6,8,10,12,13 with 4 races. Yes, life is full and busy.

Manny, the youngest, has a condition called Merosin Deficient Congenital Muscular Dystrophy. If you've never heard of it, don't worry, neither have most doctors...it's just that rare. Merosin is the word that is now called Laminin, the "glue" of protens. You can be missing some or all, Manny is missing all. It affects every skeletal muscle in the body (those are any muscles connected to bone). But for some reason, Manny's smooth muscles (not attached to bone like heart, stomach, gut) are also being affected in a progressive fashion and no one knows why.

We adopted Manny the day he was 9 months old. He's been in and out of the hospital. But he seemed to be making huge strides and getting stronger. Then mid august, he took a turn for the worst. He was not tolerating feeds. So after many hospital stays (understatement), it was decided to put him on TPN (which is "food" via the veins ... similar to IV fluids). And with that comes risks too.

His "semi-permanent" line (A central line, called a broviac) was placed on November 14. We made plans for life as he was doing so great! Best he's ever done.

December 2 he ended up with a fever and positive blood culture (showing something was growing that shouldn't be ... turned out to be a version of Staph and Candida Albicans, a fungus that's very dangerous in the blood stream). He was admitted to the hospital and they started aggressive therapy. By Dec 6 he was in the ICU in critical condition.

So now that you're caught up, I've been posting all these gut-wrenching photos of him in the ICU. Thought I'd put up a few "happier times" pictures so you can better get a sense of Manny.

THIS is Manny! Thinking about trying to post some videos soon of him if I get a second (Ha ha) so you can fall in love with him even more.

I just thought that you've been seeing too many "sad" pictures lately, it's time to remind everyone what we're praying for ... who we're fighting for. His quality of life is very high and he (obviously) has many, many people who love him.

And speaking of pictures, my friend Val inspired the great idea that people send in (via email or snailmail, etc) pictures of the people who are praying for him. We'll print off the pics and hang them on the wall so we can be surrounded by YOUR faces. So send away ... goredan@hotmail.com or

St. Joseph's Children's Hospital
Manuel Gore
3001 W Martin Luther King Jr Blvd
Tampa, FL 33607

Also, people are asking ways they can help (besides prayer). First, thanks for you offers and your love for a family and baby that most of you have never met. We're humbled and overwhelmed at the outpouring of love. I was thinking of some tangible ways we could use some help. And I want that help to count for something. I decided an Ipad for Manny would be the perfect gift for him. Once he's up and alert again, he'll love having that. His mind is so bright that it's hard to keep that brain fed ... so the never ending supply of apps sound like a great idea to me! We will be installing a "chip-in" for those who would like to contribute to the fund to purchase that. So stay tuned if you're interested in chipping in.

Other ideas include gas cards and visa gift cards. Those would always come in handy. People are shopping for us, for example, so it's helpful to hand them the visa gift card and voila!

Chest tube in

2011-12-07T22:32:00.001-05:00

So here's where I am emotionally (at least for now as of 10:30 Wednesday night)

A few days ago, he was suffering so much and I felt horrible for him. We were all so helpless. I couldn't believe how much pain he was in and I want him out of pain. Even if that means losing him.

But now? He's been suffering for several days non-stop pretty much. (He's screaming Owie as I write this.) And I had a change of heart today. He's already suffered/suffering ... so we might as well win this fight. To me, the worst thing would be for him to suffer and then still lose the battle. So we have no option but to keep fighting and win. This suffering will have to pay off somehow.

So I leaned over his crib and told him how strong he is, how much of a warrior he is. I told him he could do this and that we were going to help him fight but this is mostly up to him so fight!. He said, "OK".

The rest of the night was full of screams and crazy breathing. By morning he was really struggling to breathe. The blood work showed he was still getting enough oxygen but only because he was working sooo hard. The docs were surprised by the numbers being stable. But I know he's a fighter. Chest xray showed left lung very "wet" but right lung almost completely full of fluid "pulmonary edema" and it's quite painful. By the time the docs arrived, he was doing "air gasping/swallowing"... think fish out of water trying to get a breath. It's so stinkin' pitiful and completely helpless feeling.

getting a chest xray... he usually says "Cheeeese" the whole time. But not this time.

And then he kinda fell asleep. He was exhausted. This is actually NOT a good sign. When he was screaming like a maniac, he had some "fight" in him. And now he's lost some fight. I think he'll get it back. Even as he slept, he was doing all the signs of respiratory distress.

Doc came in and said they would put in a chest tube to drain off some of the fluid. He's been on lasix and it's not making a dent ... he's pooling faster than it can come out. This is a direct line to pull the fluids.

I was telling him what was going to happen (chest tube) and that he was fine and strong and I loved him. Didn't realize Val took the picture until she showed me later. Thankful as it's my only picture with him I have.

Val showed up with lunch and about that time, it was time for the procedure so we had to go to the waiting room. What seemed like an eternity later, it was time to go back. They were able to get over 200 ccs of fluid immediately off his chest. They also put a temporary line in his femoral vein (upper, inner groin) so they have access for TPN and blood draws. (There are currently 9 tubes/wires going in or out of him.)

His breathing was much better but not good. Only time will tell if he still has to go on a ventilator or not. The problem is ... with his underlyng condition, it's very high risk that he could go on and never go off (be on life support forever). So we'll only do that if we have to. (But it's a distinct possibility that he'll need a breathing tube.)

the orange is a cleaner, not blood. See the blue box? the tube coming out of that is the chest tube

Dan and Kaley came by for a little bit. Kaley was quite emotional ... not outwardly with words but with actions (like clingy). She said she cried all night last night worried for Manny. She's the only one who has seen him in this condition. She asked if she could sleep in my bed tonight until Daddy goes to sleep. And she kept wondering how quickly she could return here with me.

Kaley in her bow (it was the belt from the isolation gown we have to wear). Cute, huh?

So tonight as I type this after a long, emotional day, he's sleeping (finally). His breathing is questionable. And the whir of the chest tube machine is actually quite therapeutic (like a fish tank) .. unless you think about what it is for and doing.

His weight is back down 1kg which is great news. He was 15.4 last night and 14.4 tonight (but still up from his normal 12.1)
I plan to go to bed really soon here because he is sleeping. Don't want to miss this window of opportunity for sleep.

Day 2 ICU

2011-12-06T22:04:00.001-05:00

During the night, they needed to wait until his blood pressures were semi-stable before they could give anything more than tylenol. About 11pmI asked again if he was stable "enough". About 20 minutes later they gave him benadryl and it helped for a few minutes it seemed. He's only been sleeping for 5 minutes before waking up to cry.

By 3am, he'd had several rounds of fentanyl and it wasn't helping so they added morphine. It was enough to take the edge off and he was able to fall asleep for the first time in a long time. He was still groaning all night but he wasn't screaming. He slept from 3-8am.

Seems his kidneys have started shutting down. He isn't diapering and he's getting tons of fluids.

His blood tests back ... the first ones taken after his last transfusion. It's looking "decent"... still critical values but headed the right direction. BUT ... the real test will be if he can maintain over night and if the numbers are still decent in the morning. We're waiting for those results now.

He was on 3 litres of oxygen and it was keeping him at 99 pulse ox. They turned it off and he immediately tanked! They put it right back on. And he slept at 1 liter and was mostly fine. This morning, though, he needed it turned back up as he is struggling to breathe.

As I sit here, his respiratory rate is hovering around 60 (showing it's hard for him to breathe) but is going as high as 80's. He's showing all the signs of respiratory distress.

But he stopped screaming for a while last night ... He'd been screaming since 4am Monday! So I'm thankful we actually got sleep last night. (I can sleep through the nurses, the treatments, etc.. I just can't sleep through him screaming and begging for help.)

This morning his blood gasses show he is having trouble breathing and very acidic (so they gave bicarb)
His glucose is 287 (showing acute stress) so they are giving insulin
His platelets are low still (but higher than yesterday). About to receive some more.
But his blood pressure is stable (mostly)
He is retaining lots of fluid so they are giving him lasix.
His chest xray showed fluid ... hopefully the lasix will help and it won't develop into pneumonia.

1pm they had stabilized him with the platelets and felt they had a very short window of opportunity. The surgeon came immediately up and they did the sedation and removal in his bed to not cause him even more distress.

As I was kicked out of the room, God's timing was again perfect. My friend Val arrived. She had just flown in from Maryland to help and do what she could for me. Isn't that amazing?

She brought me lunch and sat with me while we waited for the news. I was thrilled not to be alone. Eventually they got it out and got in a new IV line. He did great! No breathing complications. All went perfectly.

Taken just as they felt him stable enough to remove the broviac. (Does he look stable to YOU?)

Now we wait. Hoping that most of the infection was on the line and that when they pulled the line, they pulled the source of the infection too. We will know with the next blood tests tomorrow hopefully. There are many concerns still at this point but I won't ennumerate them all. We will just cross all bridges when/ifwe get there.

The blood pressures are (mostly) stable. Which is great. His breathing is still very shallow and labored (not great). They continue to give him lasix to remove the excess fluid buildup in his whole body and specifically the pulmonary edema. They hope this will help or the only other option is to intubate him and put him on a ventilator. The benefit of it is that he would be calm, stop struggling to breathe, etc. But the problem s, sometimes once a child is this weak and put on a vent, sometimes they can't come off. So they really don't want to do that for him.

For the past few hours, Val and I have been watching and listening to him sleep. He has the most pitiful little whine/breathing thing. Makes you feel completely helpless. His pain is still high it seems.

A little while ago, Tara and Clayton stopped by with a care package. Long time readers will remember them ... he is Zoe's friend who had the bone graft the same day she did.

As I write this, Val ran to get some dinner (isn't that amazing too). Everyone keeps asking what they can do to help and I honestly don't know. All I can think of is what is inside these 4 walls. And all I want is for him to get better.

Tonight, he's starting to throw PVC's .. indicating heart is starting to stress.

Dan showed up and hung out for a while. Manny tried to wake up to chat but couldn't quite do it.

As i type this part, it's almost 9:30 and he's starting to scream in pain again. Nurse is about to suit up to bring pain meds. His respiratory status is still not good (fast/shallow breathing, flaring, grunting, etc). He's borderline to needing a vent still.

The lasix is starting to work. Kidneys are back on-line. He's coming down in weight. (He was 12.1 then 14.4kg ... not sure what he'll be tonight yet but I know it's down some. I can tell by his tummy ... his diaper can almost close again.)

Me? Exhausted tonight. It all kinda hit me. I've been in full out crisis mode. I've been just moving from one fire to the next with him. Tonight, he's (relatively) more stable than last night so I think I'm starting to feel the gravity of the situation. And the lack of sleep is starting to catch up with me. But there is no where else I could/should be.

Blood products and ICU

2011-12-06T07:30:00.001-05:00

By 11pm, I just couldn't take it any more. The pain was too intense and had lasted too long. I knew he needed more than the tylenol/motrin he'd been getting round the clock.

For those new readers, I have 6 kids, all adopted, all with special needs so I am in no way a newbie mom. For the first time in my life, I knew I needed to ask for pain meds for one of my kids.

I wiped away the tears (still crying from having written that last blog entry ... something about writing it down that makes it so "real"). I went to the nurses station and said that Manny needed something else. They agreed immediately and had actually already been working on it. They heard him down the hallway and were already discussing what they could give him.

There were several techs and nurses there who have taken care of Manny. They all "Know" me and knew that this must be bad for me to be asking. They asked if I was OK and tears immediately started flowing. I said, "I BEGGED God to let him stay with me as long as he's not suffering. Well, he's suffering!" And at that point I saw a few eyes swell with tears.

He was due for another dose of Tylenol so they gave that immediately. After 30 more minutes, they called the doc who ordered morphine for him.

Thankfully this helped take the edge off. I was worried it would completely knock him out but it was just enough to help him fall asleep. He still woke up about 3-5 times per hour in pain. (Before it had been non-stop.) And he could be comforted after about 5 minutes (which nothing was helping previously).

As I type this, it's 7:30 am and his pain has gone back up quite a bit. He's due to go down to have his central line removed at 11am.

...

As I type this, it's 7pm and the first time I've had to update all day. Why? Because after I wrote that he crashed.

I got the CBC results this morning and they were awful. He had numerous "critical" values and he was in constant pain. He had a high fever. He was "foaming" at the mouth. The docs all gather around and discuss what to do and how to help bring his values up. They decided on blood products (whole blood, plasma and platelets along with a couple other things.) But before they could do that, his blood pressure bottomed out.

Within about 2 minutes of that reading, the Hospitalist and ICU doc were in our room evaluating Manny. Within the next few minutes, he was being wheeled (with oxygen) to the critical care area of ICU. Next thing I know, I'm standing in the waiting room and he's being wheeled away to be stabilized.

A few moments later, thankfully Dan (hubby) and my Dad were walking down the hallway. I'm glad that Dan and I had decided that he would let my mom pick up the kids from school and Dan would come see me. (That was before we knew about the ICU move.)

I'm also grateful Mom is available this month. She just finished a job and was taking the month of December off to regroup. So I can see God's hand at work all over the place.

Eventually, I'm allowed into the room and he's a mess. I eventually am able to calm him down but it took a while. Since then, it's been a series of going back to the room to pack up, having Dan take the stuff (that won't fit into ICU) into the van, running to cafeteria to eat (finally). It's also been scary watching him struggle to breathe (even on oxygen), high heart rate, low blood pressures, coughing and trying not to aspirate, being in pain.

He has received numerous different blood products. I remember people praying that "The blood of Jesus" heal this baby. Well I think that's what we received today. I ask all of you to pray for and bless the people responsible for donating these blood products. I know when I've given blood, I pray. I ask God to help purify it and give it to just the right person. I pray that it is sent with the annointing and blessings of God attached. That God send HIS life (afterall, the life is in the blood). So I wondered today if those who gave this blood might have done the same thing.

From 7-8 he's been basically stable. His blood pressure is no longer at a critical level, still low though and dipping into critical. He's not stable enough to get more than tylenol at this point so his pain is still quite high. He is soo exhausted and wants to sleep but the pain wakes him up.

He's gained a LOT of weight ... they say it will all come out as soon as he is stable again but for now his skin is sooo tight that it's painful.

The plan? Hopefully be stable enough in the night to have the procedure done to remove the central line (broviac) and they hope to give him another line of some type so they can continue to give him meds, TPN, etc. (Right now, he has 2 thumb IVs and those don't support much.)

I know that many, many around the world are praying for a miracle for Manny. We know many people love him who have never met him. We could never thank you all personally ... so please know we DO feel the prayers.

Facts and Feelings

2011-12-05T13:57:00.001-05:00

2pm ... Infectious Diseases doc just left. I.am.in.shock. He is greatly concerned. He wants to pull this central line ASAP. (Is upset it wasn't already done.)

Once the line is pulled, they will see if his labs immediately improve and if so, that's good news. If not, there's already another colony set up somewhere and then we have to go hunting.

There are signs that this is already in his bone marrow though. (Clearly, NOT good news.)

Once the infection is clear for at least a week, then they might put another line in. But he has to be infection free for 14 days before they will let him out of here. SERIOUSLY??

My brain is spinning and I cannot get my head around this.

Meanwhile, his pain level is increasing. He's refusing to be touched. He doesn't want to sit, only lay down. He doesn't even want to lay on his side. There's only one semi-comfortable position for him. He can't stop screaming.

His stomach looked a bit distended so they ordered a KUB xray. They're going to have to do another one as that one showed "something" but it was inconclusive.

Then tonight, his weight is up 1 Kilo (2 pounds) in 2 days. (VERY concerning).

These are all signs that the infection is kicking his butt.

The only "good" news of the day is that the results of the blood culture are in. He has Candida Albicans and Staphlococcus Epidermis. These are both very common and found in/on most people. But for some reason, it just got ahead of him. And these both have treatments. (The bad news is that he has already been on those treatments and it's not working so far.)

So those are the facts ... what about feelings?

Can you handle the feelings? If not, stop reading here. (NOT looking for people to tell me I'm wrong or I shouldn't feel this way... just sharing my feelings.)

18 months ago I was sitting in a room just down the hall from where I am now and we were being given the news that he wasn't going to live to his first birthday. We begged and pleaded with God and somehow, God heard our prayers and let him live.

I knew then that if/when God takes Manny, that he will be better off. He will stop suffering. He will be able to run, and jump, and dance and eat. So when I begged God to let him stay with us, I was like "Unless he's going to suffer."

That was always my line in the sand.
I want him here with me, unless he is going to suffer.

And guess what? He.is.suffering.
A lot.

So there's this huge part of me that feels guilty and selfish. (Yes, I know I can look at it as all the love and support we've given him, all the wonderful experiences he's had and the love of the family. I get that ... I USUALLY live in that moment.)

But right now, as I sit and hold Manny and can't comfort him
As I watch him in severe pain
As I listen to him scream for hours and hours on end
As he is slipping further and further away from us
As I beg God to help him
it's hard not to feel responsible for this.

And I feel completely selfish.

The Mama in me wants what's best for him. I still believe to the core of my being that his life is still worth living. That he is supposed to continue to bring more joy to the world. That it's worth fighting for him to continue to stay with us.

But I also want him out of pain.

And the question haunting me all day is: If I can't have both, which do I choose?
And I'm in tears because I know the answer.

Monday morning update

2011-12-05T09:00:00.001-05:00

We finally got to bed about midnight. Slept (sorta) from 12-4 (with only about 6 wake ups). Then at 4 he woke up retching, choking, screaming and with a fever of 104.9 ... here we go again. And of course with temps that high, we have to do rectal temps. (Side note ... some people are just NOT gentle! Every 1-2 hours they do his temp in a rough way and he cries for at least 15 minutes saying, "Owie poo-poo". I couldn't agree more.)

From 4-6 he just couldn't stop crying and screaming, "Owie Mama, help" I have no clue the source of the pain but he was truly in a lot of pain. I held him. I rocked him. I patted him. I rotated him. I put him in my bed. I sat with him in the chair. NOTHING helped.

I felt so incredibly helpless. There was nothing I could do.

Finally, about 6:05, he finally just STOPPED. He fell asleep. (Phew!) But of course, that didn't last long ... at 6:15 there was another rectal temp. And we started all over again.

Now this morning, he freaks every time someone walks in the room (he wasn't doing that). He also freaks every time he poops (which is often) since it burns his hiney. And with c-diff, this is about 15 times a day right now. And he freaks when I have to change his diaper (poor guy).

This morning, my friend Val asked if she could help and made me a "button" to share. Isn't this cool? Feel free to post it around with a link to this blog. I guess it's time to spread this word farther.

__________

I had a friend send this email and I thought it was a good way to answer all these questions in case others are wondering the same thing.

Did you get to bring Kaley with you this time? Yes, Kaley is with me this time ... she wasn't with me at the ER but Dan brought her the next morning.

With this infection being some sort of Staph, does that mean it is contagious? Yes, he has some type of Staph but they aren't worried about it being contagious. There is nothing on his skin, it's all in his blood. I guess that makes some kind of difference.

Also wondering... if the white count is normal and everything else is whacky, does that mean Manny's body cannot fight this? I have never heard of white cell count being normal when there is an infection and fever. Me either. I have no clue about this. Maybe the doc can explain it to me later. I THINK it's a function of the diflucan.

Also wondering how the kids at home are handling this. With the focus so clearly having to be on Manny and you being gone... this is stress and upheaval. They truly stress out every time. They don't say that but the tension grows and it's just not the same at home without a Mama. Dan does a wonderful job of taking care of the kids. But it's a HUGE job (I know) on top of his other job. I'm also blessed to have family and church family who help with meals and taking the kids places and such while I'm here.

How is Zoe and the post-op situation going? Zoe's mouth is almost completely healed. (Her hip is.) She's still not back to a diet of full foods but mostly. She is at school and happy to be back. She is scheduled to have an appointment this week to get the stitches removed (some are still in) but not sure how we will pull that off. She struggled emotionally this time a lot but even that is doing much better as her life is back to (almost) normal.

How is your tooth? Broken still. I haven't been able to get to the Dentist yet and now have no clue when I'll be able to do that. Thankfully, I'm not in pain.

Praying for you. In tears as i write this... my heart is breaking that you and Manny have to go through this. I wish whoever is supposed to get the message that God is real and will work in their life/lives will hurry up and get a clue so Manny doesn't have to suffer through all of this "stuff" so much. Amen, and I am with you. I have this thought OFTEN. I figure if I have something to learn then let me learn it quickly. This is a HIGH price to be paying.

Also - what is the latest on the docs that know about the Merosin - i forgt where they are located, but was thrilled when i read your post that you were going to see them and they have actually "seen" a child with Merosin before. The appointment is not scheduled yet ... probably for January or even February. They're waiting for the medical records from his 2 neurologists to make that appointment.

Ups and Downs

2011-12-04T09:04:00.001-05:00

The night was long. Long. LONG.

Manny's fever keeps spiking. It will come down to a low grade fever for about 2 hours after tylenol but then right back up (and he can only have that every 4 hours). He can't have the Motrin due to being on Heparin (it's a blood thinner and they don't like to mix those two). There are some other very strong pain meds that will bring the fever down too but have some strange side effects. So for now, I'm asking them to just let his body work. Give the Tylenol every 4 hours but then nothing else unless the fever goes very high.

At this hospital, if you have a fever, you have to have your temp taken every 2 hours. Add that on top of the already frequent medicine delivery, the vitals being taken, the loud nurses, the kids being admitted down the hall, etc. Then throw in that Manny is in pain and needs to be repositioned OFTEN. (Not to mention he is usually right beside me and I can rotate him without getting up, but here, his bed is across the room.)

If all that weren't bad enough, he needed blood drawn. That should be no problem now that he has a central line, right? WRONG. They needed blood from there PLUS a peripheral site. So at 5am, they came in to do the blood draw in our room. I requested very kindly that this be done in the treatment room. (Why? I want there to be NO pain in this room so that he doesn't freak out every time someone enters the room.) They were happy to do that ... but if I hadn't requested it, they wouldn't have thought of it themselves.

He woke up as I walked down the hallway and he started crying. You see, we NEVER leave the room. If we do, it's to go to the treatment room so he knew. He was in full scream by the time we entered the room. By the end, there were 4 nurses (including the charge nurse) trying to find a vein to use. I hoped that he might have one since he's been on a PICC and then the broviac. But after several sticks and no luck, they finally gave up.

At least he got a pinwheel out of the deal

Nothing like leaving that room of torture only to know we have to go back again in a little bit. OR they will send someone from the lab to draw it. And they will not go to the treatment room, that will be done in his bed. (ugh)

Also, during the night, they finally hung his TPN, but only part of it. I'm not sure why the doc didn't include his lipids (what's the reason or was it oversight?). We're also waiting for the results of numerous blood tests. The most important ones: What is the yeast growing so we can treat it specifically? And is his infection still going up or is it coming down? And will we be able to save the line or will it have to be pulled?

7am, our nurse came in and it's Dana! One of his very first nurses he ever had when he was here at 11 months. He was still very sleepy and not feeling well but he still managed to ask her for a kiss and a blanket. :)

(This picture is from a game they play. "Feeding Kitty". He tells her to jump, she does and he says, "Good kitty" and feeds her a treat. Then it's "Sit". This cat has a lot of really cool tricks that impress Manny greatly and he feeds her lots of treats! LOL)
10:30, Doc came in. I am clearly in a funk. I wasn't my usual self. No banter, no jokes or anything. I feel like someone punched me in the gut. Why? Because he is not getting better. Reality is setting in. I told him that I was just tired. He'd been doing soooo great that we actually made plans to go out of town for Winter break. So for this to happen is to have the two worlds collide in a harsh way.

12 My Mom and Sister came for a quick visit. Manny perked right up to see them. Me? Not very good company. I'm exhausted and have very little "fight" in me. I have plenty of fight to help Manny recover but not any left over!

12:30 Nurse told me that Doc ordered Vitamin K for him. Why? She didn't exactly know but the labs were concerning. So I asked her to print me off the labs (which she did) and I've been researching. Not exactly sure what all is going on but there is a definite pattern going on.

Baby Jaguar taking a nap in Manny's bed

Seems his Red Blood Cells are all out of whack including the hemoglobin, platelets, etc. His clotting time is also very high (thus the need for the Vitamin K lest he spring an internal bleeding leak). His Sed Rate and C-Reacive Protein are also dramatically on the rise. Thus indicating an infection process. But his White Blood Cells are going down, down, down. So ... unless I'm interpreting this wrong, the bacteria is under control but the fungus/yeast is out of control.

Kaley and Manny watching the Chipmunks sing praise songs

This morning his fevers were being (mostly) controlled by Tylenol for about 2 hours, now it's not even making a dent on it. So we're having to add a fever reducer via IV. Hoping that helps.

5:30, vitals taken and for the first time, he's under what they consider a fever - he's 100.0. He was us playing, looking pretty good.

6:45 pm, he starts acting wacky. Glassy eyed, heart rate very high, strange breathing, etc so I called the nurse.

At the same time, dear friends Rich and Elsa delivered some chips and salsa and fruit for Kaley and me and some elmo balloons for him. (Pic to come). They had to hurry out after praying for him.

Nurse came in with another nurse who also loves Manny and has been his nurse several other times. They were brainstorming what could be wrong. The said to take vitals. Blood pressure was normal but heart rate was through the roof. Then they took temp and it was 105.3

They immediately stripped him down and put cold, wet cloths on him and then administered 3 fever reducing meds and called the Doc.

It took about 2 hours but it went back to 100 and he was himself again.

As I write this, it's 10:30 pm he is playing and wide awake, but the fever is starting to creep again. They will be checking him every 2 hours. If it goes over 103, they will check him every hour until it goes back down again. I have 2 nurses on tonight so that always helps to have 2 sets of eyes.

Praying for a CALM night.

I cannot tell you how much it means to all of us that so many are praying for him on such a fervent, consistent basis. I know we're being held together by prayer alone.

Septic with Staph

2011-12-03T17:43:00.001-05:00

Thursday afternoon, Manny ended up with a 102 plus fever. By rule, because he has a central line (the brovia), he has to go into the ER for blood tests. We went to the small, local hospital since it was just for blood tests. His WBC was 8.3 (normal) so they sent us home thinking it was "just" the flu. (We were all relieved.)

Friday, he still had a fever but weren't concerned since the WBC was low. But about 5pm, got a call from the hospital that his blood cultures were positive for several things (they just weren't sure what yet). They asked us to bring him back in immediately and get more tests. So we did ... again, thinking we were going home.

But no ... after many many hours and multiple tests, they decided to admit him but not to that hospital (they can't handle his complications there) and they decided to transport him to our regular hospital. They wouldn't let me drive him, so we had to go via ambulance.

He screamed as they put him on the stretcher and screamed again as they put him in the ambulance. (I rode in the back with him.) And then it "clicked" and he realized he was fine (like I'd been telling him the whole time). But he was sooooo thrilled. He LOVED every second of it. He kept saying, "Riding in ambulance."

He was cracking up the EMTs. And when we drove up to the hospital, he said, "We're here! At the hostipal" (No, I didn't mistype that, it's how he says it.) The EMTs were a little shocked that he knew where he was.

Then it was a ride up to the 8th floor. This hospital has several kid sections and lately, we've been going over to another building so it's been a while since we've been up here. Sure enough, just like is true to form, all the nurses and techs remembered us and immediately started doing their "oohs and aaahhs" of how cute and big he's gotten.

By this time it was after 3am and he still had a pretty good fever and only had a few minutes of sleep all night. (Which is more than I'd had.) But Manny was in amazing spirits! He was being the funniest I've ever seen him. Like a stand up comic. At one point, there were like 10 people in our room in full out belly laughs at him. One thing, for example, is he kept answering "No" to everything. (Not in a snotty way but in a funny way and then laughing.) He answered no to everything for about 20 questions. Then they asked, "Is no your favorite word?" (Expecting him to say "no") But he said "YES". And everyone lost it.

4am, he fell asleep. Conked out completely. About 4:20 he woke up from a dead sleep SCREAMING and clawing at his broviac (he wanted that OUT). I called for the nurse and we flipped on a light. Sure enough, he was in a full allergic reaction to the meds. They stopped it and gave benadryl and eventually it went away. But man was that a horrible reaction.

Due to the fever, he had to get temp taken every 2 hours. There were meds every 30 minutes changing. By 7am, they were in for the morning routine. Bottom line? I might have gotten an hour of (non-solid) sleep.

He woke up a complete grouch and in a lot of pain. Due to the antibiotics, he is now in full c-diff mode.

At 3am they turned off his TPN (so they could start the antibiotics) and assured me they would start something soon so he wouldn't crash again. (Mental note: Should have gone with my gut on that one.)

By noon, he was starting to act sluggish. I started asking for the Doc. They assured me he was on his way. (Mental note: I should have insisted harder.)

By 3pm, he was slipping in and out of awake again.

3:45, Dan and the kids arrive (forgot pics) with some lunch/dinner. He is out.of.it. But finally we're able to wake him up. (He's just a grump and has to be repositioned so he's not in pain.)

4:30, doc finally arrives. Most of the tests are still pending. But one test is back for sure ... he has Staph A in the the blood. He also has a yeast in the blood (not sure what kind yet) but it's what they're most concerned about. They will be sending in an infecious diseases doc tomorrow to discuss what all can be done to help him, to clear the infection and to TRY to save the broviac. (Remember how difficult it was to get in?)

I asked him, if he had to guess, how long will we have to stay in the hospital this time?? He said "Weeks". I about hit the floor. I'm sure my jaw did. I could FEEL the energy get sucked out of me and felt deflated.

I had no clue this would be this long potentially. And immediately, Dan and I started praying that this wouldn't be so long. We're asking for a speedy miracle! Thanks for joining us in this.

Specific prayer requests:
1) Pain free for Manny
2) Complete healing from the staph and yeasts
3) Healing within days instead weeks
4) Not having to pull the central line/broviac
5) No residual effects

As I was typing this blog, his fever has gone waaaay up. 1 1/2 degrees higher than it's been up until now. AND he's started retching too (must be another reaction to a different medicine).

Hint of Hope

2011-11-30T22:01:00.001-05:00

Got a call from the Endocrinologist. Most of the tests he ran came back "Normal". That's good news, just not very helpful in pointing us in the right direction. One DNA test is still pending.

But one test did show something abnormal. Not sure how helpful it is yet ... I'll be having an appointment next Tuesday with the Pediatric Metabolic Geneticist and she should help shed some light on it.

So here's what we know. He for sure has Merosin Deficient Congenital Muscular Dystrophy. That explains the vast majority of his symptoms. There are just a few (like the progressive nature of the smooth muscles that are being affected) that cannot be as a result of the Merosin. So we're hunting for the cause of THAT. And we think it metabolic and maybe related to mitochondria.

With that in mind, the test showed a very low amount of carnitine in his blood. There are two things they measure, Free and Total. His was about 30% low on both.

From what I can find so far ... Carnitine is what helps digest fats. (Here's a link ... http://ghr.nlm.nih.gov/condition/primary-carnitine-deficiency) Ironically, that link is produced by the NIH ... which is the group that has been collecting all of Manny's reports, etc. for an evaluation in January.

If this is at the root of his second problem ... we may be on to something. From what I'm reading, it DOES make a lot of sense. It can cause GI dysmotility. It can be triggered by periods of fasting (like when his PICC line cracked and he collapsed quicker than he should have).

On the other hand, his carnitine level could be just a "red herring". Like it might be low because he's on TPN.

The Endocrinologist suggested that they add carnitine to his TPN solution. They passed the suggestion along to the GI as well as to the Geneticist.

What does this mean? It MIGHT mean we are on to something. It's certainly not a quick fix but even a hint is very hopeful these days. It's a HOPE that he might be able to eat again! And THAT is worth fighting for.

Released from the Ortho

2011-11-29T21:47:00.001-05:00

Monday was Zoe's first day back at school. About 10am, get a phone call from the school nurse. Zoe was up at the clinic due to the horrible swelling on her hand from the bite. I was clear across town getting blood and urine tests done for Jacob and Kaley. She'd been sent to school with Benadryl and cream on her hand. I had an appointment for her later that day. Not much else we could do for her. Zoe wasn't wanting to come home anyway. So they gave her some ice and sent her back to class.

Monday afternoon, took her to the doc and we all feel it's a fire ant bite, just a really, really bad reaction to it. At age 2, she fell into a fire ant bed and got probably 150-200 ant bites by the time we got them all off. So this reaction is likely caused by that experience. Next time? It could be really, really bad. Doc gave her prednisone and an antibiotic to go along with the benadryl and hydrocortisome cream.

Tuesday was Zoe's second day back at school. About an hour into the school day, I get a phone call from the school nurse. (Hearing a theme here?) Seems like Zoe was in the classroom and just happened to slip. Of course, she landed on the hip that had the bone taken from it. Teacher freaked. Called the nurse. Nurse called me. I assured her that Zoe should be fine, that landing on that hip should be no different than falling on the other hip at this point (she's 4 weeks post surgery). I wasn't able to talk to Zoe but I assured the nurse that Zoe is fine, I'm sure. (And besides, I was also across town again at a doctor appointment.)

Once I got her from school, I told her the nurse called me. She didn't know why. I asked about if she fell. And she told me she didn't cry. It barely hurt. It was no big deal. (Phew). Seems like the teacher was just extra cautious/concerned. (Which I appreciate.)

Hoping not to get a call tomorrow from the nurse.

Thrilled to be the Mama of this strong, spirited little girl.

Meanwhile, across town, I was with Manny at the doctor appointment. His Orthopedic doctor is inside the hospital where he and Zoe have been going. Last week I was cleaning out the toy closet and had tons of big items that he never has been able to use that people hav given him. (It's truly amazing how many toys he cannot use due to it being to hard or requires standing, etc.) So I wanted to donate them to the play room at the hospital. Today was the day I delivered them. Yay! The toys are finally going to be played with.

Then we went to the appointment. 7 months ago, we went to this Orthopedist. At the time we didn't have an official diagnosis. He wanted to see us again in 6 months. So here we were.

I was very concerned about the contractures on his feet. Remember all the serial casting he's had to have done? Remember the Houdini act he does to get out of the casts? Remember how he's got AFO's (braces) for his feet? Remember how he couldn't wear them most of September - November due to being in the hospital with IVs in his feet?

I was worried that he would want to do some more casting for the feet. But NO! Yay. He said as long as I can still getthem in the braces, he was fine with it! Now if this baby were running around or even standing on those feet, this wouldn't be enough. But he can't do that at this point so no need to cause him more pain.

I told the doc the official diagnosis. Informed him of what it was, what it involved, etc. Merosin kids often have contractures of the ankles, hips, wrists, elbows, etc. So he double checked all of those (he has none besides the ankles - which he was born with). And these kids also are prone to sciolosis. (He has no signs of it.) I already knew all of this ... but it's good to have it confirmed by a doc.

So given his diagnosis, the fact that he's clinically stable with the bones at this point, and has a mother who knows what to watch out for, he doc felt that we didn't need to be seen on a regular basis. Make an appointment only if we have something new. Gotta love it!

Menawhile, this doc couldn't stop saying how cute Manny is! When he walked in, Manny said, "Hi Doc" and it cracked him up. He has a kid the same age as Manny and couldn't believe how verbal he is. At the end of the appoitment and as he walked out, Manny yelled, "Bye Doc, Thanks" and I heard the Doc crack up the whole way down the hallway.

Kaley finds it fascinating how EVERYWHERE we go, Manny brings people happiness. He says "Hi" to everyone in the elevator (and usually invites them to Chuck E. Cheese or the beach). He greets people in the grocery store. People will be walking around in their tunnel-type gaze and he "snaps" them out of it. Young, old, male, female ... doesn't matter. He brings joy to people. There is just something special about this kid and I hear that dozens of times every single day.

Can't believe I get to be his Mama.

In summary

2011-11-27T21:34:00.001-05:00

Yes, I've been silent for the past 12 days. Thanks to all of you who checked in on us to see if we're doing OK. Yes, we're just crazy busy (even for us).

In summary ... Zoe is now 1 month post surgery and I would love to post pictures but she is getting very private about her owies and I am going to respect that. I have pictures that maybe she'll let me post some day in the future but for now, I'm not going to break that.  How is she doing? Physically fairly well. The hip scar look amazing and she has no pain.  She is off all restrictions for activity.

Her mouth? The stitches are still in. They shold be out by now but are not. We are supposed to help work them out by brushing and rubbing but they are not budging. She is also not allowed to eat in the front part of her mouth ... but that's fine as she has no teeth there anywhere and never does. She is not able to eat sharp foods (chips,crackers, etc) but that's about it.

Emotionally? This has been the hardest part for her by far. She is struggling with the whole thing and I'm not sure what made this time different. We're spending a lot of time talking.

Manny ... Since his broviac - all is going well. He's getting weekly dressing changes and weekly labs. So far, so good. He did get a pretty bad chest cold last week and he still has a lingering cough but we have all the equipment at home that they have at the hospital so we are just nursing him back to health at home.

Meanwhile, I've talked to some fellow moms of kids with Merosin Deficient Congenital Muscular Dystrophy and even some docs ... they are in agreement, there is more going on with Manny than just the Merosin. So it was recommended we send his stuff to NIH in Bethesda, MD. For the past 2 weeks, I've been collecting MRIs, reports, genetic testing results, the muscle biopsy slides, etc etc from numerous docs and getting them shipped to Maryland.

Long story short, they all arrived and the doc looked at them. His initial reaction is that he does indeed have Merosin (we weren't doubting that). But he also has some very atypical things going on in conjunction and he would like to see us. Monday I'll making the schedule of when we can fly out there. (Probably January.) Looking forward to that meeting... it will be the first time we've ever seen a doctor who has ever even SEEN another Merosin kid!

Thanksgiving. We had a wonderful time here. I always cook for an army because if I have to work that hard on a meal, it better last for several other meals! We have my parents, sister, nephew and several others who didn't have a place to go. It was very nice.

Thursday night, we gathered all our stuff for our yearly camping trip with our church. Yes, that's right.

Friday morning we packed up the van and headed out to the campsite.  And before you all freak out, Manny didn't sleep out at camping. Dan came home with him at night and hung out with us during the day. But the rest of us were there having hotdogs and making smores, getting filthy, finding strange animals, play games, etc.. My kids LOVE being outdoors and could be out 24/7.

We always go to the same group campsite and for the first time, we found a snake. One person thought it was poisonous. (I never saw it, thought I'd have nightmares if I did.) But they gathered it up and drove it about a mile away and released him there. We heard owls arguing. We laughed. We got filthy.   The weather was 80 in the day and 55-60 at night. Perfect if you ask me.

A couple of things went wrong ... Saturday night, Zoe said her finger hurt. It was a tiny bit red like she had a bite of some kind but she didn't remember being bit. Now here it is 24 hours later and her finger is quite swollen and painful. I'll have to put a call into the Doc tomorrow if it doesn't start to look better.

Oh, just thought of one more thing ... you know those glow in the dark necklaces? One broke and sprayed right into Lukey's eye! It's toxic I'm sure so all the ladies jumped up and immediately started flushing it out. Didn't take too long before he was good as new. (Who knew!) Funny, he said, "At least it was a blue one because I have blue eyes so it matches."

And my tooth completely broke. The one right behind my eye tooth so it's completely visible. It's not a partial break or a small thing ... the whole thing is GONE. Yes, it was a bad tooth and I should have taken care of it a long time ago but didn't have that kind of money. They were talking THOUSANDS of dollas (5 or so) just to fix this one tooth so I chanced it. Now I have this huge gaping hole and no dentist. Guess I'll be working on that tomorrow. And in the meantime, not talking or smiling much. (Yeah, right.) And still don't have a clue how I'll pay for it but don't really think I should go without a tooth. One in the back? One on the bottom? Who cares! But this is right in the front. (sigh)

The next couple of weeks? Tons and tons of doctor appointments. I'll try to do better about keeping everyone up to date on the happenings. But I can't promise. I get to living life ... and I feel like all I'm doing is spinning plates, just trying not to let one fall.

Hope everyone had a blessed Thanksgiving! And may you have something to be thankful for, every day of the year.

From PICC to Broviac Photo Version

2011-11-15T18:56:00.001-05:00

Here's a photographic view of our recent hospital stay. He was fine, crashed, got a central line and is now home.

By the time we got to the ER, Manny was looking like this. I couldn't wake him up. He was completely passed out. VERY scary.

This is him after he is stable and in the playroom. His first time out of the room in all of our hospital stays as he is ALWAYS on precautions. He was thrilled to be out of the room.

Taken a few minutes before his broviac surgery. I wasn't exactly sure where they were going to place it but I wanted the picture of him "before" any incisions.

That last moment before he was wheeled away to surgery. He is a charmer and had ALL the staff ooooing and aaaaahing. Do you notice the lady in green? If you look closely, she is holding his hand! I told her this was a secret to keeping him calm and she got the lucky job of being the hand holder she said! He was smiling and calm. (No drugs, they dont like to give him anything as it can lower his respiratory rate.)

A few minutes after surgery. Here's what your looking at. His left arm has he PICC line in it. The low tummy of course is his GJ feeding tube. The center chest is the broviac. The two patches at the top are the two attempts the surgeon did prior to getting a viable vein. (Personally, I am happy that the final broviac is in the center and not at the neck. Just on looks alone!)

Closer view of the broviac. The circle section is called a biopatch. The tube has the clamp on it and then there are extentions at the bottom. This version's opening is one for needles. We now have a extender that has a screw top that affixes to the TPN and syringes. It's all held on by tegaderm since he is allergic to all tapes. (Hoping he doesn't develop a tegaderm allergy.)

About 4 hours post surgery, they invited us down to a "Bead party". He didn't want to make a necklace. He just wanted to play with the beads. Yes, we supervise him with not allowing him to put them in his mouth. But the truth is ... as a child who has been "NPO" (Nothing per oral ... or nothing by mouth) since 8 months old, he is seemingly unaware of his mouth and has yet to attempt to put things in his mouth.

Manny on his diaper changing station at home. I'd just changed out the bandages for his PICC line. For those wondering, they took out his PICC line and bandaged it up. We remove the bandage 24 hours later. This is important to be extra careful with bleeding issues since he's on Heparin (a blood thinner) so that the lines in his veins don't develop clots. But of course this makes him more prone to bleeding.

The dressings on his neck were supposed to be changed at the 24 hour mark too. BUT, when I went to change it, they were still oozing blood. I called the surgeon's office and talked to one of the Physician Assistants who assisted in the surgery. I needed to talk to her and not just anyone. Why? She was IN on the surgery and knew all the extra incisions they made and how it wasn't a typical surgery. She told me to give it a few more days since he was still bleeding. Normally it would be fine to remove it now (and recommended) but since he was still oozing blood, it obviously needed more time. There was likely a little bit of trauma to those veins in his attempt to use them for the broviac.

The broviac's bandages get changed once a week by a home health nurse at first. Eventually, they will train me how to do it. (For now I'm happy for HER to do it!) They draw labs at the same time.
and put him in his favorite pjs ... his monkey shirt. Every time he sees it, he immediately says, "oooo-ooooo, aaaaa-aaaaaa". Makes me smile.

So thrilled to be home. And thrilled to have a way to feed him again!

Broviac 101

2011-11-13T08:14:00.001-05:00

TPN is a great thing ... Manny basically slept through the night. It was amazingly wonderful.

The day was uneventful (like I like it). We discovered that surgery is scheduled for 9:45 Monday morning. If all goes well (like we expect it to), we MIGHT be able to go home Monday evening. Thanks for the prayers.

Answering Questions (AKA Broviac 101):
I had a couple of people ask why we got the PICC when we need a Central line and also why do we still need the central line if we now have a PICC. Great questions. Here's my attempt to answer.

All of his doctors (here in Tampa and Gainesville) decided he needs a central line. And we are going to get that on Monday - surgery time set and everything. BUT before then, he needs to be stable. They tried with IV but it wasn't happening and they realized he'd need to be on TPN likely to get stable. PLUS, he is
needing a LOT of blood tests over time and he has not a lot of veins. So the PICC makes sense in the short run just for all of this.

In addition, our experience has been that the PICC lines are easier to put in him than the regular IVs and less traumatic. We are able to do it with light meds (not full sedation) and they have the ultrasound so they can truly see the veins. They are also going into a bigger section of the vein (up high on the arm) and not on the wrist or hand like is typical of IV. The IV nurse explained that due to his very very low tone, he has not really developed many veins that are usable. And he has many "collateral" ones ... meaning his body is trying to make some but they are like dead ends with no blood.

SO the real question is ... do we still need the broviac. Yes. We just don't have to have it by this Monday. The new PICC buys us some time. So there is no real reason that we HAVE to do the broviac now ... but since that was the plan, we are going to do that. In addition, if something were to happen to the broviac, there are apparently a lot better options of repair, etc. AND they told me that if something happened to the broviac, they can go back to a PICC temporarily IF the vein has been PICC free for a certain period of time. So they want to spare the precious few veins he does have.

Right now, he has one good vein and 1 sorta OK vein. They used the good vein the first time and they are having to use the sorta good vein right now. They doubt this vein will hold up more than a couple of weeks. And the repair of THAT problem is HUGE (if it "blows" the vein) and we're in another emergent situation. And to define good vein ... they want at least 2 millimeters, bigger is better. The OK vein is less than a millimeter. There are no other veins in either arm that are even that big.

Finally, this OK vein is sitting "on top" (PICC nurses word for it) of the artery. She had a hard time making sure this went into the vein and not the artery. So any kind of injury or infection to this vein would be very, very bad. She insisted, "Do NOT go home with this PICC." She knows just how precarious it is because it's clear on ultrasound.

So with all that ... he needs the broviac. Like I said, not necessarily this Monday but soon and why not do it while we're already here, he's finally stable and it's scheduled.

I've also had questions about PICC versus Central line/Broviac again. I'll do my best to explain (while I muse on while I went the PhD route and not the MD route):

PICC line goes into the arm. It's like an IV but with IV, the fluids/meds are put right there in the tiny veins on say the hands, wrist, foot, etc. and it circulates through the body. With the PICC, it's put in the upper (bigger) section of vein and then this long catheter is threaded down and near the heart where it's circulated. Unlike an IV, you can also get blood out of this vein. PICCs are fairly easy to put in. The problem with it: it's very hard on that vein. So for short term use, this is perfect.

But for long term use (like Manny's), it's really not a good solution. So they go to what's called a Central Line. There are two main types of that. A port ... that is completely under the skin. To access it, there has to be a needle inserted into the skin and into the port. (This is not a great option for him since he has daily access/usage of this. A port is more often used for things like chemo where it's only periodically accessed.)

The other main option is a Broviac. It looks a lot like the PICC but it's in the chest. The lumen is hanging out and it's "tunneled" (I'll give you a picture of all this when we get it inserted and all will become clear.) We have opted for the Broviac. Even though it's hanging out of the body, we've gotten used to that with the g tube, then two lines with the GJ and then the one with the PICC ... since we've had him, he's had SOMETHING hanging out of his body. (Yes, it's freaky looking!)

The reason to do the Central line is this is a more stable, longer option. It still has really high infection rates and clot issues, etc. But seriously, if you've gotten to the point where this sounds like a good idea, that tells you a lot.

My Kaley

2011-11-12T16:14:00.001-05:00

12 years ago on 11/11/99, a tiny little girl was born. Her birthmother knew (due to her circumstances) that she was not the best choice of a parent for her. This little girl was born in a home in Tampa and then the paramedics were called. The birthmother said she wanted her placed for adoption. That was the last time they saw each other. She didn't even give her a name. So for the next two years, her legal name was "Baby Girl King."

This tiny girl was taken to St. Joseph's hospital. (If that name sounds familiar, it's where I always go with Manny and Zoe has her cleft surgeries.) She was tiny but likely not premature. She was drug addicted but otherwise healthy. She spent 9 days in the hospital before going to a foster home. After 2 days in that foster home, the system discovered she had a half sibling in the system. They moved her so they could be together.

For the next 3 months, she was there ... it was not a good foster home. (I'll leave it at that.)

Meanwhile, during all that time, her adoptive family was working towards their certification, classes, home study, background screenings, etc. This family found a wonderful adoption agency ON THE DAY she was born (but not knowing it at the time) and decided that was their agency.

Her brother was legally freed for adoption and matched with this family. They met him, fell in love and that was that. At the end of the meeting, the social worker said, "You know it's both or none, right?" And I was like, "Both what?" And that's the first time we heard about the baby sister.

Crazy part is how we met.

I was with hubby and we were about to ride the elevator up to the meeting. We knew the foster mother was coming and it was not customary (or even approved of) for the foster kids to come to this initial meeting but she had no baby sitter. So she brought the son. As we waited for the elevator, a white mother walked up with a double stroller ... an 18 month old black boy and a baby in the back. We knew instantly this was the little boy we were there to discuss. (Meanwhile, remember? We had no clue there was a sister, much less that she was in the back of the stroller.)

So the whole meeting, I was playing with this child who turned out to be our Jacob. I completely ignored this other baby in the back of the stroller. Afterall, why play with some random baby versus bonding with my soon to be son?

So at the moment they said, "Both or none" and I said, "Both what?" They picked her up and said, "This is his 2 month old baby sister." ::pause:: WHAT?

By ths time, the meeting was over and I'd blow the chance to see her, hold her, touch her. And now we had some thinking to do. We went in knowing we were going to get an 18 month old black son with some special needs and now they throw in a bonus newborn with special needs too??? Were we ready for this???

I instantly knew YES. This were our children.

The little girl was not legally freed for adoption like Jacob was so we had to do 3 extra weeks of paperwork to be licensed. So we did. During those 3 weeks, I went to visit the kids almost daily. Doing baths, taking walks, feeds, etc.

March 22, our daughter slept in her foster home for the last time. From that point forward, she was our little girl (not legally at first, but that came). We changed her name ... legal name was "Baby Girl" but they called her Vanessa. (Which meas "butterfly" ... and she is tiny, delicate and beautiful like a butterfly). But we decided to call her Kaley ... "Black Princess with powerful energy" was the meaning I'd read.

Over the past 12 years, this little girl has turned out to be an amazing gift. I am so thankful for the "bonus baby" God decided to give to us.

You all know a bit about Kaley and her amazing heart... like how she stayed with us the whole 3 weeks in Gainesville. You have read about her giftedness with Manny. I have bragged before about her amazing creative and artistic abilities.

This is one special, sweet, amazing gift to me and to the world. I don't know exactly who she is going to be when she grows up. She has the ability to be "the boss" and get the job done (don't let her small stature fool you into thinking she is weak). But what ever she decides to do in life, she will do great. And I know one other thing ... she will have a proud Mama standing beside her, cheering her on.

One special thing she said to me a long time ago when we had a miscarriage (Kaley was old enough to understand) ... she was very sad for "the baby that died". she said that she will have a baby in her tummy some day and she wants me there when that baby comes out since I didn't get to have that. I was in shock as that was something we'd never talked about but she "knew" and she understood.

One funny thing she said to me when she was about 4: we were talking about what she wanted to be when she grew up. Doctor? Vet? Teacher? and she said, "I want to do nothing. Just like you." LOL (She has since recanted that statement ... but it certainly was funny at the time.)

My message to Kaley today and every day: My dearest Kaley. I don't know how I got to be the luckiest mama in the world to have you be my daughter, but I'm very thankful that I was chosen. You are a bright spot in my day. You lighten my load daily. You make me proud to call you daughter. I will be there for you. I will hold your hand and kiss away the hurts of life the best way a Mama can. I will cheer for you and help you be the best "you" possible. You are one of the biggest gifts of my life. Daily, I'm amazed at you. May God continue to shine His favor on your life. You're a blessing my sweet daughter.

All my love,

~ Mom

Stable... not the horses kind

2011-11-11T23:19:00.001-05:00

Let's start with some stats:

Friday night 11pm- blood sugar 154! (very good)
Saturday morning 5am - blood sugar 136! (Very, very good)

For those who are wondering, here's his height and weight:

27.7 pounds, 12.595k
88 cm 34.8 inches

As he went to bed last night, I couldn't tell how he was because ofthe effects of the versed. (That drug makes him look just like he blood sugar issue did.) As the night continued, I could tell the versed was wearing off and he was grumpy! He cried ... from 1:40-2:45 he pitched a huge fit ... I'm sure it was a blood sugar or versed issue. He did it again at 4am for 30 minutes.

When it was time to wake up this morning, he was (basically) himself! I'll have to get the official results of the labs to call him officially Stable, but *I* (the non-medical doctor that I am) says he is.

9:45 took us down for a bowel, stomach xray (he was very tender in that area yesterday).

10:00 Surgery consult from one of the Docs (yesterday it was a PA) and he suggested a pyleloroplasty. It took great restraint to listen to what he had to say as this is NOT NOT the right answer. This is the opposite of a good idea, in fact. But I have to realize that he is not as familiar with Manny's case as I am so he might need a little time to catch up. (Not meaning that in a snotty way... well, maybe just a tad.) But there is noooo way I'd sign for that surgical procedure.

For those not familiar. They would open up his abdomen, "clean out" (as he put it) the lesions in the stomach and first part of the bowel and make a larger hole in the bottom of the stomach. The purpose of this procedure is when you have gastroparesis (delayed emptyping of the stomach). And yes, he DOES have that. So what's the problem?

If you're a regular follower of Manny, you probably already know the answer. Food backs up from the bowel and back into the stomach. So if you feed through the stomach, (no matter how large the hole), won't it eventually end up back in the bowel??!!?? How the heck is this a good idea?

Thankfully, this is not his main surgeon, just the on call doc. And thankfully I only need a broviac at this point in time. IF the whole team ever decided this was a good idea and they could convince me (doubt it) I MIGHT consider it. (doubtful again).

BUT ... there was something good that came out of this conversation ... Manny is on the schedule for a Monday Broviac.

10:30 The Endocrinologist came in and we talked for a long time. He didn't know of anything off the top of his head that would cause his symptoms. So it's going to be something obscure.

I have no clue the ODDS of having TWO strange, rare disorders but it seems that's what's going on. This doc was also not shocked at all about him crashing so quickly with TPN withdrawls. We need to expect he will in fact from now on. Also, he discussed the dextrose issue. Most people are on about 45-50% and he is on 70%. Not sure why it's so high.

This doc has ordered quite a few very specialized tests and we won't get results for about 2 weeks probably. He'll also send the results to the Geneticist since she specializes in Metabolic disorders. (Why wasn't she already tracking this down? Because when he got the diagnosis, everyone stopped looking for anything else.)

11:15 Cartaya reports that his lab are all perfect again! I already knew blood sugar but sodium and bicarbs are also right on. Oh, and the WBC was 31,00 is now 9,000 (perfect). So I was right ... he does NOT have an infection brewing. He is NOT sick. His body went wacko from the stress. Which makes me realize, I MUST have a back up plan for if/when his TPN line is unusable for whatever reason. He cannot wait even one night.

The other lesson is that people need to believe me. Seriously. Yesterday, the ER doc was scaring me suggesting all sorts of bad things (due to the extreme lethargy and the WBC of 31,000 and not responding to sugar). He suggested it was sepsis. (Always a high possibility with the PICC line and with TPN.) But I knew he wasn't acting sick, no signs of infection, NO symptoms until the TPN died.) He was also getting ready to do a spinal tap. WTH?? I was not on board with that either as I knew it was sugar related. But I had no proof at that time.

I have that proof now. His WBC is back in range. PROOF it's not sepsis, and proof he didn't need a spinal tap. (phew)

I mentioned the surgeon's idea about the pyeloroplasty and he was just as baffled by that suggestion as I was. (again, phew)

12:30 his blood sugar is 115 (PERFECTION and his norm). So he is officially stable. (Not just by Mama terms, but by the doc's tests.)

Rest of the day ... uneventful.

6:30pm, Dan and the kids arrive with Tacos. Hung out. Kaley decided to stay with me (even though she doesn't have a change of clothes). Manny is still very, very grumpy periodically. I know he's just hungry waiting for his TPN to arrive. He cried hard when they all left.

They weighed him again tonight and he is now 12.4 Kg which is about 27.3 pounds so he's down a tiny bit from yesterday. And about a pound down from last week. His sugar was 109. (I was told anything from about 80 to 130 for him is target, but close to 100 is best.)

About 9pm he snapped out of it. A few minutes later, the TPN arrived and we're very hopeful that this will bring back "Happy Manny".

10pm, he asked to go to bed. He says, "Blanket and kiss" ... his way of asking to be tucked in! (Sweet, huh?)

And because Kaley is here tonight, I was able to take a shower! And get some hot tea. If you haven't read the blog about her, please do ... it will melt your heart.

Good night from a tired but blessed Mama.

You gotta be kidding me

2011-11-10T22:03:00.001-05:00

Darnit! I *KNEW* our lives were getting too quiet and I hadn't been in the hospital enough this month yet. Tonight, Manny's PICC line cracked! What does that mean? The past 3 hours I spent on the phone with the home health nurse, then the GIs and we came up with a plan ...
What happened? How did it crack?? There is NOTHING that we do that could crack it. We don't even TOUCH it. (Mostly because the more you touch it, the more likely the infection.) There is this tube like thing that come out of the skin. At the end of it is this "hub". Those parts are all permanent and part of the PICC line. After that, there's an extender. This part is changed about 1 time a week by the home health nurse. We put the "milk" into the extender. So literally, we NEVER touch the hub. THAT is the part that has a huge crack right in it.

I discovered it because tonight, I hooked up the milk like normal and then an hour later I saw a puddle under his high chair. I then ran the line to find out where the hole was and discovered it was the Hub!

Called the home health nurse and they confirmed what I knew ... nothing can be done except a new line. and of course friday is a holiday and then the weekend.

Thursday night he went to bed normally and all was fine. The night was uneventful until early morning when he got aggitated and was alternating between grumpy and dead asleep. When it was time to wake up to take Zoe to her post op appointment, he was very difficult to wake up. He would talk for a few minutes then right back out cold. (Not like him.)

Went to Zoe's appointment and on the way I called the pediatrician. She said to take him to the ER and she called ahead. I went ahead with the appointment for Zoe since we were there. (More about that later but quick version is all is well.) The office staff noticed Manny was not acting right and I told them what happened. They told the doc and she took us right in. While in with Zoe, the surgeon got an idea to call the IV team (that's who the ER would have called) and got Mani on the phone. (I've mentioned her before several times.) And she said to bring him to this certain spot in the hospital.

This hospital is across the street from where we were. Mani looked at it and knew immediately it couldn't be repaired. The site looked great but she knew that due to the large crack, infection can set in from the outside AND a clot can start on the inside since we can't flush it... so she took it out. (He didn't even wince!) We decided I should call Cartaya (also mentioned him before) and get the ball rolling to get the central line/broviac placed.

Cartaya felt we were probably good enough to go home on pedialyte and be admitted on sunday night to get the thing placed on Monday. (He told me the warning signs to come back sooner.)

And I headed to the van, relieved. BUT ... this gut feeling said not to leave. So we ate a snack and chilled for a few minutes. While they did that, Manny was acting VERY weird. He said, "I not OK". I was praying for wisdom. My "gut" said to stay. But I also wanted to go home. So I called Dan and he said to get it checked out, to go with my gut.

Went into the ER. The doc immediately noticed he was "passed out" and his skin was FREEZING so he decided to do an accucheck ... and his blood sugar was 36!!! Seriously, dangerously low. They gave him 350ccs of dextrose solution and in one hour his blood sugar was 251. She didn't believe it so she rechecked it and it was 261. (Dangerously high.)

Thankfully I thought to bring in the TPN bag to show the solution he is currently on. They were in shock that he was at 70% dextrose ... apparently, that's excessively high. But while on it, his sugars are stable and normal.

So the question is ... why does he have to have that much dextrose to keep his sugars stable? AND what can cause him to crash that quickly (when they thought he should be fine for 4 days off of it and on pedialyte alone. Cartaya is thinking some kind of metabolic issue. (Interestingly enough, Shands thought the same thing about why he couldn't handle food but never followed with that train of thought.)

So tomorrow they are going to take some more labs and I will be seeing an endocrinologist for the first time. The current thought is that Manny must have not just one but TWO rare conditions. (My thought for a while now since all his symptoms can't be explained by the Merosin alone.)

We got up to room and they did all the regular checks ... and now (after being off the dextrose for 4 hours), his blood sugar should have stabalized but it was 296! Going the wrong way. Call into the doctor. They put him back on dextrose and pedialyte. They'll check him again at 11 pm.

Meanwhile, Surgery came in for a consult and he remembered us. He did our muscle biopsy in April which gave us the diagnosis of Merosin. He said that clearly manny needs the central line ASAP but they can't put that in until he is stable. To get stable, he will need to be back on TPN. To get that, we needed another PICC line. (sigh)

The same Mani ... from earlier in the day who removed his PICC is the same one who is called back to do it. We all laughed. She said they NEVER do PICC lines on kids this age without sedation nor with a parent in the room. But based on my word that I could keep him still and calm and that he would be fine, she tried it. She was not confident at all that this would work and we all decided that we would abort at any time that we needed.

We proceeded and long story short, it was a piece of cake! This was easier and faster than a regular IV line. He was given some light versed to take the edge off and he was FINE! She was in shock at how easy and fast (about 1 hour faster than expected). I was so grateful, she was so relieved. Now Manny can get his labs done in the morning PAIN FREE. And we can start PTN back up tomorrow once they get that solution made (it takes time). (insert breath sound here)

There are soooo many details I'm leaving out because this is already so long. If the details are still fresh and relevant tomorrow, I'll write it then. If not, it wasn't meant to be.

Also, don't be shocked to see me writing more blogs soon as I still have to send the one I wrote about Zoe's post op to surgery and I will write one about Kaley (who turned 11 today!) and a few other random thoughts.

Summary: Manny's not a typical kid (in either his highs or his lows). He's still not out of the woods right now and they are watching him very closely. He's not considered stable yet ... but we think we have a solid plan in place to get him there.

start him on pedalyte via jtube tonight. First thing tomorrow, we see if (on a holiday) there is a team that can put in a central line. If not, we have to wait until Monday likely. And that means we'd be admitted likely tomorrow. The doc... said they only let us stay home tonight because of the kind of Mom I am (awww). Ironically, we were supposed to see the Doc on Monday to discuss the need for a central line and how soon to do it. Guess Manny just had a different timeline.

Dear Stranger

2011-11-03T17:09:00.003-04:00

Dear Stranger,

You made a comment.
What you said makes no sense.

"You have your hands full."

I'd like to make a suggestion... This is a phrase that needs to be eliminated from your vocabulary, never to be used again.

Only exception to this rule ... if a person's hands are ACTUALLY full. Then you are allowed to say it. Then again, I am not sure why you'd want to say it then either. Why would you want to point out such an obvious thing? It's like saying, "You're a girl" or "You have on a dress."

So maybe the real only exception to the rule should be that it needs to be a phrase that is completed such as, "You have your hands full ... let me help you with that."

But I find the phrase is never really used in that context.

So what ARE you trying to say when you say that?

I was at an appointment today. The announcement came on, "Joan Smith to window 2". Joan Smith immediately got up and started walking to window 2. I heard the worker say (in incredulous tones), "You have your hands full." Why? Because the woman had a 3 year old, a 2 year old and was very pregnant.

So exactly, what was the point of saying that? *I* certainly don't know.

I hear it all the time directed at me. And I never know what they mean or why they say it or how I'm supposed to respond.

To me it means: You are in over your head. You have too many children. You look harried and overworked. You look horrible. You don't know what you're doing. Or perhaps it means You are doing something that I could never do. I would never have that many kids.

I can see people saying it if my kids were running around like wild children. Or if they were loud and out of control. Or if I was looking harried and overworked. But no, even sitting nicely, everyone smiling, playing nicely together... they feel the need to say this inane phrase.

I cringe when I hear it. It's quite insulting.

I'm sure you just meant it as an off-handed comment that means nothing to you and you just tossed out this phrase without thinking (which is my point). What you don't understand is that I hear that phrase about 20 times a day. And I don't like it.

Since I don't know what you're trying to say, I find I have no rebuttal that works. I am left to just sit there and give a half smile/half grimmace. ::awkward pause::

To me, it's no different than me pointing out, "You sure have your mouth full" when you take a bite of food.

I hereby request that you and everyone (all 7 billion people in the world) refrain from using that phrase.

Thanks.

P.S. Next phrase I will tackle? "Are they all yours?"

Before/After (Some Graphic) Pics

2011-10-28T19:34:00.002-04:00

BEFORE PICS:

AFTER PICS:

About 6 hour post surgery with her new bear Mr. Brown (a gift from her speech teacher)

24 hours post surgery ... lots of swelling. Bruising on inside of lip. Feels minor to moderate pain controlled by motrin/tylenol alternating.

28 hours post ... still bleeding some from the mouth. Sounds VERY "stuffy" and both nostrils are filled with dried blood. Her voice is still very strange sounding (likely from the breathing tube irritating her throat). She has a great attitude and just spent an hour at the playroom doing arts and crafts but was certainly ready to get back to the room and her bed. I don't have any pictures of her actual graft yet as it hurts a bit too much to touch it.

In the playroom playing with the pots, pans and food. (She said she was hungry.)

Zoe's Bone Graft

2011-10-27T20:21:00.000-04:00

Yellow spiderman scrubs. Check.

Hair pulled back in pony tails. Check.

Overnight bag packed. Check.

Art projects and movies for Zoe. Check.

Snacks and drinks for Mama while Zoe is in surgery. Check.

Excited little girl. Check

That's our morning so far. For a few weeks now, we have been talking about the bone graft surgery. Zoe understands what it involves, what it will feel like and what it means to her.

And why is she excited? She will finally get teeth!! (More about that in a sec).

So as I wait for Zoe to get out of surgery, I will take this moment to tell all of you what is involved in a bone graft in "regular" words.

You know how you have top teeth that go into gums and right behind is the roof of the mouth. Well, if you have a complete cleft lip and palate, you will have a hole or "cleft" where there should be lip, teeth, gums and a roof of the mouth. At about 1 year old, Zoe's lip was sewed up. Then at 18 months her palate was closed (with skin mostly).

But she has no teeth in the area of the cleft. (Hers is considered quite large and goes almost down the middle, just slightly shifted to the right side and through the right nostril.) She is missing quite a bit of bone in the roof of her mouth. Right now, her roof of the mouth is almost entirely skin and that skin gets holes in it called a "fistula". If there was no surgery done, she would likely never have teeth in the front (she's missing 6 on top).

Bone continues to grow up until late teens. Her bottom jaw will continue to grow. But without a bone on top, that will not grow and she will have an increasingly larger underbite. Her top teeth already don't match up with her bottom teeth (not sure how she chews, but she does) and this would just get worse.

Without that bone, she will never have teeth up there either. Nothing to anchor to. Oh, and the roof of the mouth is also the base of the nose. So without that, the nose will continue to look like it is "collapsed".

So they need to get a bone. Where do they get that? From the hip. And then they sew it into the roof of the mouth.

The mouth will be sore for a while (as you can imagine). They will have her on a liquid only diet for a week. Then another 3 weeks or so of "soft diet". (Things you don't have to chew ... mashed potatoes, overcooked pasta, etc.) Last time she was on this type of diet it was for the pharyngeal flap and she was on it for 3 weeks. And she lost 3 pounds (she was 48 pounds). She still hasn't gained it back (she's 46 pounds as of today). Everyone is always telling her how lucky she is to get to eat ice cream and pudding. Poor baby, she is not a fan of those. She likes salad and chips. Like Mama like daughter. In June we got really creative and will do it again.

They all say the worst part of the pain is the hip. Surgeon said the pain will be pretty intense for about 3 days, then really sore for a good week. Then eventually, the pain will go away and she'll feel like playing but can't. Nothing rough for at least a month. (THAT will be hard for her!) No ball, bike riding, swimming, wrestling, etc. So she'll be up and around for Thanksgiving.

They require her to stay home from school for 2 weeks and then it's optional after that. I will send her only when I feel she can stay safe (Like no balls to the face or hip, will eat the right foods, etc). If not, it's only 3 weeks until Thanksgiving break. The teacher already sent home work, books, activities.

The surgery is about 2 1/2 hours. The surgeon says they usually call after the hip bone is harvested but before they put it in her mouth, just to keep us in the loop of how things are going.

One cool thing I haven't mentioned is that we are not doing this alone. A while back, Tara (a friend and fellow adoptive mother) said that her son Clayton is having his bone graft surgery too and wishes we could do this together. So we thought, Why not? Asked the Surgeon. She said yes. Clayton was adopted from China too, is 6 just like Zoe. He has a bilateral cleft and is in Zoe's book! So how cool that both of them are doing this together.

As I was typing all this, Tara and Clayton stopped by the waiting room on their way to surgery prep. I always buy Zoe a little something for her hospital stays like art supplies. This time I got her some cool stencils and such. And we bought the same little kit for Clayton. Well, apparently, Tara and I think alike and she bought Clayton some origami kits and she brought some for Zoe. (How sweet!)

10:05am, got a call from the surgery nurse, "The bone has been harvested". That news means that the first half of the surgery is done. She was doing well. Anesthesia is always a higher risk for her due to her retroverted airway ... and this is the longest she's ever been "under". But so far so good.

As I hung up the phone, it hit me just how "not normal" of a sentence that was. I go through the motions of life, trying to be "present" in every moment. Trying to suck the marrow of life and learn all I can. I don't really stop and reflect on how my life looks to others. But then ... there's a sentence like that ... and it hits me. My life is not normal. In so many ways.

11:10 Zoe is out of surgery ... took just over 2 1/2 hours. They were able to get the whole graft from one hip. Lot more bleeding from the mouth than I thought it would be. Morphine is my friend. Within 30 minutes of surgery, she was already taking sips. (Did I mention how tough she is?)

For those curious folks, here are other details: she is on an antibiotic for 7 days, a special rinse (2 times a day), has to do saline rinses when she eats/drinks. Soft diet for at least 4 weeks and we'll go from there. (It will depend on her healing.)

Her graft was considered straight forward ... her cleft is very wide but it is unilatereal and I understand that complicates the graft a bit because it has to be pieced. Hers is unilateral so it can all go in as one piece.

She has disolvable stitches. We have a follow up in 1 week, 2 weeks, then we'll go from there. The hip has tegaderm which is waterproof ... so she can shower but not soak (bathe).

More details to follow as they come.

3pm, the child life team came by to see if she wanted to go to the playroom. I was SURE she would say no (afterall, she is still spitting blood). But trooper said YES. And she walked down the hallway! No offense meant to those who do not have this kind of child, but ... Man, my kid is tough! The nurses were in shock. She was going slowly and carefully. She wasn't rushing or racing. She was careful and deliberate. But she did it. She did a quick art project and then was ready to head back to the room.

The rest of the afternoon she took turns alternating between being fine and throwing up. Zofran helped finally. She has round the clock pain meds going and more morphine as needed. (So far ... NONE.)

She's walked down the hall way a few more times. The nurses have been in shock at her. Oh, and tonight, the nurse asked for Zoe to open her mouth so she could see inside. And she opened it WIDE open, just like she hadn't just had mouth surgery!

We are thankful for the prayers. We know God hears them!

Home again

2011-10-21T22:22:00.002-04:00

Thursday morning: "I'm going home I've done my time" ...

that line from that tune from my childhood keeps repeating in my head. And all I can say is "It's about time."

3 weeks ago when we got here, I was worried they'd send him home too early, without seeing the problem. Then Dr. Jolley "got it" and I knew we were good.

Then they worked tirelessly to get us an "adequate source of nutrition" and tried to avoid TPN. He even told me that they would plod along scientifically and he wasn't in a hurry to send us home until *I* felt comfortable with the decision.

And I can honestly say ... today is the perfect day to go home. Not one day too early or too late.

So in about 2 hours, he will be disconnected from the TPN for the drive home. 3 hours home. The nurse and supplies will be there. Training. Reconnected.

And so life with our new normal begins.

...
Friday night: We've been home just over 24 hours now as I write this. Hospital life and home life collide hard. It feels like one is running clock wise and the other is running counter-clockwise and when I try to merge the two worlds, a tornado ensues.

Like since being home ... Manny took a 2 hour nap on the way home so he wasn't exactly ready to sleep last night. I was ready to collapse and he wanted to play. Then he screamed (pitched a fit) for almost 2 hours as I was about ready to cry I was so tired. Dan was out jogging (he didn't get to do that while we were gone since he had Zoe and couldn't leave her here alone). Manny woke up many times during the night to be repositioned ... he did better in the hospital bed so I might see what I can do to find something more like that for home.

Then this morning ... just trying not to drown in all that has to be done. Steep learning curve on some things. Run around with insurance things. Denials of meds that he needs. Working out appointments. Rescheduling ones we missed in the 3 weeks gone. Getting Zoe squared away. Cleaning up the house enough for nurses to come to our house and not condemn it. Trying to get Zoe over this cough she has. Dealing with children who have been motherless for almost a month. Trying to wade through the laundry that got tossed in the rooms as my sister was trying to help pack up the boys. Scrambling for dinner without going to the store. Bank run. Pharmacy run. Post Office run. pick up Jacob at my parents. 2 nurses to come by today to check on him and check on him. Not help, just ask questions. (That's a few things I did today.)

But on the positive side ... it's 10pm and everyone is asleep. I was able to get the TPN connected and disconnected and reconnected all by myself. (Even got the nurse's stamp of approval.) My kitchen is clean and staying that way. We made a small dent in the laundry. We cleared a path in the girl's room so we could walk in there. Had a healthy dinner of baked fish, rice pilaf, fresh steamed spinach with sauteed garlic, sauteed onions and fresh bread along with raw veggies. (I missed good food at the hospital!)

In other words, I survived the day! One step at a time. Plod through. Before I know it, I'll be back in the full swing of things and doing this stuff in my sleep.

And for now, I already can't believe it was almost 3 weeks gone. The memories are already fading on just how sick he got and how the heck we survived those 7 weeks of torture until we got to Gainesville.

We are all (including his doctors) hoping for a miracle. Hoping that his brain and gut all start working together in unison. We are also all at peace with our decision to go to TPN.

Except for being a little skinny minnie (and a shorter temper) ... Manny seems no worse for the wear. His heart rate is down, he's not retching or coughing or congested. His oxygen levels are perfect. In other words, ALL his issues were related to the food and the inability to process that food! So without food in his belly, life is "good".

Very grateful to all of you! I know most of you read and dont' comment. (That's fine.) I know you pray and you talk about Manny to our heavenly Father. And I KNOW that He hears you. I am asking God to bestow many, many blessings on each of you. You're lifting up this precious little guy before the Throne of God. And I do the same thing ... I might not know you or know your name. But I know God hears your every prayer and I'm asking Him to return the favor.

day 20 and counting

2011-10-20T11:56:00.000-04:00

Look what we woke up to:

Wednesday nothing much happening.

I'm sure there are tons of things going on behind the scenes but nothing that I know of. As of right this moment, I HOPE we are still going home tomorrow, since I haven't heard otherwise.

Dr. Novak did come in and tell me all the tests from yesterday were normal. (Good to know, what we were expecting.)

The rep from the home health nurse team came by to do some basic training (she was a bit flighty and had 6 phone calls during her 20 minutes here). Thankfully I read the manual that I found online. So I am good.

5pm, they disconnected us for an hour from the IV and we got to go outside. We expected to hang out outside but it was COLD. (OK, cold by Florida standards if you're wearing sandals, tank top and shorts.) It's been in the 90's ... but the cold front came in yesterday. Guess I should have looked at the weather before going out! (But 20 days inside and you don't really think of weather!)

Before going to bed, he saw the Buccaneer's shirt and said, "Pirate". Kaley got the bright idea of making him a hat. He wore it for a few minutes but was generally not a fan.

At one point I left the room to get some ice and when I came back, I saw the most angelic thing. I stood for a minute, just watching. Trying to absorb it all in. I tried to capture the moment in my mind, heart, soul and being. Pictures could just never do it justice.

The past 48 hours

2011-10-18T23:22:00.000-04:00

Someone asked how long that Manny has had this problem. Truth is: Parts of this he has had (in varying degrees) since we got him at 9 months of age. (I have no clue about 0-8 months.)

He's has troubles aspirating, retching, (and a whole long list of symptoms) since then. There have been days and even weeks when all was "fine". But those days and weeks have been few and far between.

It's gotten progressively worse over time and it got REALLY bad in mid August. He was in a lot of pain, screaming, retching, etc. It's been unrelenting since then. Life has been sooo difficult. Hard to watch him choke and suffer.

Sunday, the TPN "kicked in" because he woke up "himself"! He truly was back to his old self. He was laughing, playing, engaged. It wasn't until then that I realized just how far down he'd slipped. These 2 1/2 weeks in the hospital have been VERY hard on him and I didn't even realize just how difficult. But to get him back fully now, the contrast was stark.

When the docs walked in Sunday, he was playing with his letters. He knows the name and sound of most every letter. He also knows all his numbers 0-9 and can count up to 15 objects consistently. He was showing off for them!

I was THRILLED that the grumpy baby was replaced by my happy baby!

And now Monday starts the work of trying to get things arranged so we can get home. (That will take a lot of work, by the way.) We'll need so many new supplies, machines, nurses, meds, etc. EVERYTHING has changed.

Monday - 1:30 pm: Dan, Zoe and Kaley get here. We hung out and had a fun time. Manny even got the okey-dokey to go with us downstairs for lunch. They disconnected the TPN for 30 minutes and we headed down. It was so nice to feel "normal" again, if only for 30 minutes. We were sitting at a table, all eating lunch, chatting, being a family (well, part of one). Forgot to take a picture.

4 pm: Dr. Jolley came in with the results of the biopsy: Basically normal. (Nothing that would account for his strange problems he's had lately.) So we will start changing him to what they call "cycling" his TPN (which means some times he will be on and sometimes off of the feeds vs the 24 hours a day.). If that goes well for a day or two, we can go home. Meanwhile, they're working to get our supplies, meds, nurses, etc. set up for when we get home.

5 pm: Dan and Zoe head home. Manny was not happy. He's fine now but was not ready for them to leave.

It's nice to have Kaley back too. She keeps me entertained and by having her here, I eat. I think of her needs and then realize I should probably eat too so I do. She is also a lot of fun and can help play with Manny so he's not so bored with me. (I only have so many tricks ... and after almost 3 weeks, I'm about out of tricks.)

Monday night ... all is going well. He basically sleeps through the night with a few "Help me Mamas" along the way (His way of asking for me to reposition him). I cannot begin to tell you how nice it is to go to bed NOT terrified. I am not afraid of him choking and retching and aspirating and desatting. It's still hard to believe now just how bad it got and for how long and how we survived it! And now to think that is over.

We now begin new things to watch for and be concerned about and be vigilent about. But those days are over and I couldn't be more thankful! Like I've said before, we didn't come to this decision to stop feeding him (via tube) lightly.

Tuesday, 9:30 am, the nutritionist Mackenzie came in. She's been consulted on the case since the beginning. She has been the one researching and tracking down these strange and unusual formulas. But we hadn't met until today. So it's nice to put a face with the name. And she was happy to meet Manny too.

10:30, Dr. Novak just left. He had a million questions quick fire style. He thinks we're on the right track too. He wants to order another gall bladder ultrasound (I told him they did one in September but he wanted another one anyway). And tomorrow, when they draw blood, he wants to add a pancreas test. These have already been done so we're not expecting to have new results. He basically said he felt that due to the circumstances, there is probably nothing else that can be done to keep him feeding via the digestive tract. I told him that I was at peace with the decision. That I knew the team did EVERYTHING and I trust the decision. (Not that I like it, just that I'm at peace.)

12:30, Ultrasound of the gallbladder, pancreas, spleen, kidneys and bladder... not sure what they are looking for in all of those body parts. And now they've ordered a urine sample. Since he can't go on command, they will have to affix this sticky bag around his pee to collect it. (He is not a fan.)

12:45, Dr. Lawrence asked if I am comfortable with my pediatrician monitoring the TPN for Manny. Yes, she is awesome. So that means they're starting to get a few ducks in a row for life outside of here. That's great news. There's still a lot to coordinate - machines, medicines, feedings, nursing, supplies, etc. And once I get home, I have to learn how to use the machines, set up the TPN, change the dressings, do the sterile technique for all of this, monitor his symptoms, etc. EVERYTHING has changed! Lots to learn.

1:30, Discharge nurse was working things out with me and letting me know what is going on. She feels that (unless something changes between now and then), we will get everything wrapped up tomorrow and then be discharged Thursday. We have almost 3 hours home (we usually have to stop on the way to help Manny move around) and then several hours of training from the home health nurse Thursday afternoon.

3pm, The rep for the home health nurse and the pharmacy that will deliver his feeds and supplies came by to chat and arrange a few things. THIS is what they do so they specialize in it. And there happens to be a pharmacy right in Tampa so if there was ever a problem with supplies and such, they are local (which is a huge plus). And they are all over the country so if we ever travel, they can arrange to have supplies sent to where we travel.

The rest of the afternoon was quiet. Love having drama free days and nights! And I'm soaking up the last few days of "calm" before the proverbial storm. When we're discharged, we hit the ground running. Load up the van with 3 weeks of stuff we've accumulated. Drive 3 hours home. Immediately get trained by the nurse on what to do and how to hook up and disconnect his feeds. Try to get readjusted. The kids all have Friday off so the boys should arrive some time Friday morning. It's trying to get used to the new schedule. Try to reconnect with the other 4 kids (the boys I haven't seen in almost 3 weeks!) And try to keep Manny away from Zoe who is currently ill. (Hacking up a lung apparently and too sick to go to school.)

Whew! Better get to bed and rest while I have the chance. :)

Some explaining

2011-10-15T22:26:00.002-04:00

Thanks for the prayers. The calls. The emails. The comments. They mean a lot to us.

I should address a few things and clarify a few things. (Tired Mamas don't make themselves as clear as they think they do.)

Manny is on TPN via a PICC line. This is like iv solution but has more to it than just the water and electrolytes. People can live on it for years. The PICC line is in his arm but threads to near his heart. They put it in via an ultrasound. Then they check the placement of it with an xray machine. His was 2 centimeters too deep so they had to back it out and rebandage it.

(And for the record, they said he was a very difficult stick even with the ultrasound ... no wonder those nurses have a hard time with IVs.) They gave him a little ativan for the anxiety and that helped a lot. They let me in and I just had to wear sterile outfit like the medical team. I wasn't prepared for all the blood and how long and wirey the picc line would be.

For now, there is nothing going in his GJ tube. No formula, no pedialyte, nothing. Even meds are going to be given via the PICC line for the time being.

The docs want to keep looking for solutions for why his bowel isn't functioning. I am ready to say enough is enough for now.

A person can use a PICC line for about a month before it has to be changed out. So for Manny, they might keep the temporary one and then eventually change to a more permanent one but not sure when that would happen.

At some point, he will end up with a port (under the skin) near the collarbone. I had said before that it goes into an artery and I misspoke that. It goes in a vein still.

Next, many people are being very helpful in suggesting types of formula and alternate milk sources to try. So here is a list of things we've already tried. (This might not be all of them as I'm doing it off the top of my head.)

Pediasure, Peptide, Peptamen Jr, Peptamen Jr 1.5, Elecare, Compleat Pediatric, Pedia Smart, E028 Splash, Soy, Almond, Rice and Breast milks. They all have the same effect ... just to varying speeds and intensities.

The only thing that was going down was Pedialyte and even that started to have some troubles. That's why they chose TPN for him. The only conclusion one can draw is that the brain has stopped telling the bowel what to do. It's in essence unusable. This is NOT a part of what typically happens to kids with his disorder so it's something unusual.

His condition is very serious and complicated. He will live though and no way to tell how long before this starts to affect his liver or get an infection. We're also concerned about the tapes ... they have to bandage this thing onto his arm and it's a lot of tape to hold it in place. He's so sensitive to them ... that can be a source of infection in itself.

So like I said ... this is very serious.

And to state the obvious (some people weren't understanding this). He eats and drinks NOTHING by mouth. He hasn't since 8 months old and they feel he never will gain that ability. He was being fed into his stomach until that quit working. Then he was being fed into his bowel and now that has quit working. So the only other choice for nutrition is via the veins.

So very hard

2011-10-14T21:40:00.000-04:00

Thursday we did an Upper GI Endoscopy, expecting normal results. All went well with the procedure and the doc said all looked normal. He took a biopsy of the stomach and duodenum just to be sure but it was as we expected.

Today, Friday, we're going to switch to TPN ... they're calling it temporary. For now. As I type this, I am waiting for the doc and his thoughts today. I know yesterday he seemed a bit discouraged, like we were running out of options. (I already knew this.)

You see ... God prepares my heart and soul for the things to come. I'm not sure if everyone has this experience but I do. I get "feelings" of what's coming and it's a way to get adjusted to it before it happens. I've learned to listen to this little "voice" (no, it's not audible). For many, many days now, I have had the feeling that we're headed to TPN. I know they are saying it's only temporary, but I have that feeling.

So yes, I know that this is what needs to happen. Yes, I know it will make certain parts of life easier (no constant IV sticks, easy blood draws, etc.). I am aware that this is going to make the retching stop and probably help him not aspirate. He will not need the salivary surgery. It will be easier on his heart and respiratory system. Life improves!

So what's the problem? It's another loss. I can hardly breathe when I think of the things Manny has already lost. Here's a short list: A birthmother, a birthfather, his native culture, his native language. He lost the ability to drink from a bottle or eat with his mouth, most of his stomach, then all of the use of his stomach and his bowel. He cannot move. I don't know when it will hit him but some day I'm sure he will be not very happy about not being able to run, jump, climb, play ball, etc.

And yes I know that he's gained so much too! I get that. I'll have to write that blog some day but for now, another loss seems HUGE and I am not able to do anything to stop it.

And today's loss is ... another loss. It's a huge step in the WRONG direction. When he went to G feeds, all he had to do was gain the ability to swallow again and he could again eat. The he lost his stomach's functions and he had to gain swallowing and get the tummy to work again. Now we've lost bowel and he'd have to get ALL of that back just to eat.

I know kids who have lost all this and are perfectly FINE with it. They don't care. But Manny DOES. He is always asking to have something to eat and drink. He WANTS food. I've started hiding in the corner of the hospital room so he doesn't see me ... it's soooo pitiful. He has never been able to eat this food but he often asks for a hamburger and chicken nuggets!

There's a part of me who is greatly disappointed in the fact that our ways are not God's ways. HE could heal Manny in a nanosecond. He could touch Manny and we walk out of here and grab that hamburger on the way home. So I get disappointed when our strides are backwards.

His disease is not a progressive one. We're not supposed to lose functions. This isn't typical with Merosin Deficient Congenital Muscular Dystrophy. So something else is going on with Manny too. Because this has certainly been progressive.

And with each new loss, I wonder ... what's next to go?

11am ... Doc just left ... said we'll try the TPN, slowly crank it up and see how he tolerates it. He still hasn't given up on using the J for feeds, he is just not sure what else to try yet. He said, "I'll be on call all weekend" ... which is code for we're not leaving any time soon. I'm considering how much longer I should let this continue. My intuition says it's almost time to go home and get on with our new normal.

In a little bit, Dan is coming with Zoe for a quick visit. Then he is going to take both girls (Zoe and Kaley) 2 hours away to visit his sister and her family. Kaley has been quite conflicted. She wants to stay here and help me but also wants to go have fun and see her cousins.

I have left the decision completely up to her. Why? Because I NEED her here. Our lives are so much better by having her here. I can take a shower, go get lunch, get some hot tea, etc. without Manny completely wigging out. She is also wonderful at playing with him.

At the same time, she's a kid. She deserves to have fun and to get outside and play and have a life. And I want that for her.

With much distress, she chose to go with Dan. So we packed her up.

This is going to be a long, quiet weekend.

2pm Dan and Zoe arrive after a longer than expected trip due to traffic. Just as they got here, they were doing the ultrasound on Manny's arms to see if they could find a decent vein to use. He cried so hard that they decided to give him a little something (ativan ... lowest dose possible) to help his anxiety.

I was allowed back in the room with him and he cried the whole time. It was less crying than with the IV sticks (due to the meds on board) but you could tell when it hurt. This team does basically only PICC lines and the main person said this was a HARD stick.  Even with an ultrasound to SEE the vein, she was having a hard time. He has so very few veins already and then they're weak and "spindly". She believes it's because of lack of use of his arms and legs. The veins are atrophied.

Much blood and many tears later, he has his line in. We got back to the room and he just hung out with Daddy for a while. Daddy is not the type of man who cries a lot or easily and sorry to out you Dan, but I could see tears just inside those eyes.

Well, soon after (about 4:30), the sedative drug knocked him out and he's still out at 9:30pm as I type this. (wasn't supposed to do that).

6:30 Dan, Zoe and Kaley left. Kaley was so conflicted that I finally had to just basically tell her that Manny and I would be fine. She deserved to go have some fun. I could tell she was about to cry as she left. She wanted to be here for us. I assured her we would be just fine and I'll tell her all about what she missed.

So now I am sitting in a quiet hospital room. Since Kaley has been here this whole time, I have had some one to talk to and play games with and chat with. We just hung out after Manny would fall asleep at night. Tonight, the silence is very stark.

I guess I need some reflective time.

I have been holding my very weak baby wondering where we go from here and how much more I can/should put him through before we say "Thanks for trying so hard, but it's enough."

So very hard.

Meloncholy Wednesday

2011-10-12T11:11:00.000-04:00

Here is my Facebook status from Tuesday:

I haven't written a blog for the day ... I just can't make myself put my thoughts down. Why? Because we're starting to have some difficult talks with the docs. We're not out of options .. but getting close. And with each test, it seems to indicate that another body part has stopped working. I'm thankful he's alive. I'm also deeply saddened by his suffering. I'm reminded that God keeps EVERY tear in a bottle (Psalm 56:8) so that means all of mine and all of Manny's and all that you have shed on our behalf. It counts for something.

What's new? Nothing. That's the problem. One thing after another they have tried in hopes that something will work. When the truth is ... nothing is working.

The truth is ... they have no clue what is wrong with him so they have no way to fix it. I point blank asked the doc what he thought was going on ... liver? gall bladder? other? And he said, "I think it's the bowel". I asked, "Are we talking serious dysmotility or is the bowel dying?" And he just shook his head yes.

They still want to try a few more things before we go to TPN. Many people are curious/confused about what this is.

Total Parentral Nutrition = TPN

OK so entral feeding is the traditional way ... the digestive system (like mouth, esophagus, stomach, bowel) or where the food goes into any of those places. (Like G tube feeding is straight into the stomach, where J tube feeding goes into a part of the bowel.)

So TPN is where it bypasses that entirely. It's similar to IV fluids (most people are aware of that). But instead of going into your veins, the go into an artery. There is something called a PICC line which is where they put TPN into your arm. This is best for temporary access.

TPN typically goes into a Central Line (in your chest, near your collarbone). And there are several types of access. Some are above the skin and some are surgically implanted into your skin. You'll hear about "ports" and such. The type of use will determine which type of access they use.

Now the entral feeding takes the whole digestive tract to help deliver nutrients and eliminate waste. Versus with TPN, it all is filtered through the liver ... which makes it very hard on the liver.

It also goes right into a major artery so if there were to be an infection at the site, it's extremely dangerous as it would immediately be into the blood and the patient becomes "septic".

They do a lot of monitoring of body function while on TPN and you're under close watch (which is good). We might even need to consider some level of home health nurse just to be sure.

Oh, and you can't get it wet so no showers or baths or swimming. (We had just signed up for some water therapy. We live in Florida for crying out loud. We go to the beach and we have a pool. So this was news that bothered me too.)

Finally, the big deal about TPN is ... for him, they feel it would be quite life shortening. He'd stop retching so quality of life goes back up, but eventually, it would become a problem and too hard for his liver to take. So they are taking this very very seriously before they go this route. And I appreciate that. If we go to TPN, I need to know we tried everything else first.

Here is my Facebook status for Wednesday morning:

Thanks for all the prayers and kind words to my last status. Last night was rough ... he normally sleeps but he didn't, he screamed a lot. I think I'm most struggling with the feeling of "impending reality" versus wanting him to be restored and healed. And I feel trapped between those two worlds. Then throw in the fact that I don't want him to suffer (and he is) and my Mama's heart can't bear to watch him struggle. He still has a lot of "happy" moments too, mostly those. But the bad is bad and I stand by watching, helplessly, uselessly with uncertainty of how to proceed. And just wanting to wake up from this nightmare.

So why is this so "heavy"? because it means another body part has shut down. We're going backwards. I am completely good in knowing God is kind and loving and merciful and still in the healing business today. We are still standing in faith for that miracle (or series of miracles).

I also know that God sees the big picture and we only see in part.
I also know His ways are not always our ways.
I also know that Manny is in the palm of the Lord's hands.
I know that live or die, Manny has a glorious testimony.

So what's the struggle? I am his Mama. If I don't fight for him and for his life and his quality of life ... who will? It's my God-given job to feel every birth pain, to cry when he cries, to hurt when he hurts. It's my responsibility to protect him (so imagine how I feel every time I subject him to another experiment or treatment or IV stick ... I feel like I'm letting him down, though I know it's not true ... but it FEELS like it).

I am the one here in the middle of the night when he yells out, "Mama, help me". I'm the one here when he says, "I mad" when they're doing something painful to him. I'm the one who tries to help him breathe again when he's choking. And I'm the one to console him when he can breathe again and says, "I choking." And I can't explain to him why, just try to comfort him.

And I wouldn't trade this job for anything else in the world. It's just that some days it feels like I didn't get all the manuals for this. I didn't get all the super powers I clearly need. I missed the memo about how to proceed. I wasn't equipped with a heart guarding vest that I feel I need some days. I didnt receive the extra brain power I will need. And no one told me to buy stock in Kleenex.

But what I was given was a love for this little man beyond words.
And THAT proves I'm the right person for this job ... I'm his Mama. So I suck it up and get on with another day.

Another Theory Bites the Dust

2011-10-11T08:58:00.001-04:00

Failed experiment after failed experiment.

That's been the past few days. They are testing out theories.. and one by one, Manny proves the theory wrong.

Painting Lightning McQueen ... he is a very neat painter!

Today's failure was the most intense of all. We tried him on a food based formula (compleat pediatric) and I had to shut off the machine and call for the nurse. 117 ccs had gone in and 100 had come out. Then he started retching ... badly. Once it even came up in this throat. How do I know? He said, "Yucky!" He had a hard time catching his breath. He was screaming OWIE and pulling up his legs (best he could).

Apparently, the nurse called he Resident and he called the Head Doc. Both showed up in the middle of this so they could SEE what was happening.

A few minutes later, Manny collapsed and just basically passed out. Even his blood pressure bottomed out. (75 over 50). As I type this, he's still sleeping it off. He's back to pedialyte.

The doc said he has no clue what else to try at this point ... but he'll come up with something. He was very intense as he said this. You can tell he is taking this as a personal challenge. (I think that it helps that the morning and every other day, Manny has been a real flirt. He's quite charming and engaging. When he is on pedialyte, Manny is "hiself". But ... to see him like this? Your heart just breaks for him! You MUST figure it out and get him back to his cute, charming self.

The nurse came in and said that they are going to restart his IV fluids ... just for extra calories since he's losing weight. His foot vein hasn't been used in a couple of days but they flush it periodically. She flushed it and all looked great.

About 30 minutes later, he was crying about pain again and this time ... it was his leg. Sure enough... his leg was infiltrated. That means instead of the fluids going IN the vein, they go around the vein and into the tissues. That's not good. It's quite painful. His leg is swollen up to his knee and hard as a rock.

That also means we needed a new IV. One hour and 3 pokes later, they got one. In his thumb. You're getting desparate when you resort to thumb veins, trust me. And I think they're now officially out of veins to try. We might end up with a port or a PICC line by tomorrow anyway just for the veins.

Today has been particularly hard, depressing and agonizing. He's suffered a lot today. And I wonder how much more I can/should put him through. When do I call it and say enough is enough? I'm getting there. But with every new day is new hope that THIS will be the solution. So we plod on.

Cute Manny Things

2011-10-09T19:25:00.000-04:00

OK ... so tired of talking about the stupid medical things (nothing's changed ... they have no solution and they're still trying).

So how about telling you a few new things Manny's doing while we've been here?

When a person comes in our room that we haven't met before, he immediately says "Hi. I Manny" (and puts his hand on his chest). Then he points to me and says "That Mama" and then to Kaley, "That Kaley" (or sometimes he says "That Sissy"). He just started this in the past couple of days. It always gets a great reaction from the new person!

Next, he apparently likes our door closed. If someone walks in and doesn't close the door behind them, he will tell them to close the door repeatedly until they close it. He says it kindly but insistantly!

This morning we were playing with some Uno cards. I do different things with them like have him match colors. This morning I was having him identify the numbers and them match them with another one like it. I'd hold up a 7 and he'd say 7 and then I'd have him hand me all the 7's he could find on his tray. We got to the "reverse" card (has 2 arrows on it). And I asked him, "What is that?" (I expected him to say he didn't know.) He said "That way". Isn't that cute? I think that's a brilliant way to describe an arrow.

During one of his recent choking episodes, the nurse was in here with us and she was trying to get him to talk and see how he was doing. She asked, "You OK?" Once he could talk again, he said, "I just choking". (Isn't that just soo stinkin' pitiful?)

He can count to at least 13 without missing any numbers (counting objects).

He can recognize many of his letters and most of the numbers. He knows the basic colors. He knows the basic shapes (square, circle, heart, smiley face, triangle, etc.) Oh, and when he sees a triangle, he calls it a "Chip, a triangle" ... Does that tell you I must eat a lot of tortilla chips!?! :)

.....

Now about the medical stuff. In summary, they gave him a day off on Saturday. Sunday at noon we started with 10% formula and 90% pedialyte. He didn't handle it very well either, but not as bad as the full strength. So we decided to try it again for his 6pm feeds ... we're still in the middle of that as I type. Clearly, his body is bothered by "something" ... fats? proteins? carbs? combo? and we'll have to sort that out. We have a looong way to go from where we are to where we need to be. And I appreciate the team is sticking with this and going to proceed until we figure it out!

Dan and Zoe drove the very long way up here to see us. It was good to see them but also very hard ... makes us all realize how much we're all missing out on. And when it was time to go? Let's just say there were tears. I plod along here, putting one foot in front of the other. But the truth is ... it's hard.

Formula doesn't add up

2011-10-07T22:26:00.002-04:00

So in summary, Manny did great on IV fluids (his baseline) and he did the same on pedialyte (with only a slight increase of saliva but not a biggie). Thursday night they were going to switch him to formula at the midnight feeds. I asked if we could switch it earlier at the 6 pm feeds so it would have more time to observe him. They really thought he was going to do fine and we'd be discharged today ... I had doubts since they hadn't addressed the milk in the wrong place yet.

6pm feeds ... within a few minutes, he was already showing signs of distress. By 7 he was coughing. For the previous day on pedialyte, he had nothing in his stomach that needed to be vented.
7:30, he had 55 ccs of bile in his stomach returns. 8pm 50 ccs stomach acids. 11pm 50 cc milk. (Stop feeds at 11) 11:30 another 40 ccs milk.

The on call peds doc came in and evaluated him. She said not to resume the feeds and that she'd call the on call GI doc. They all agreed just to go back to the pedialyte and we'd reevaluate a new plan in the morning.

He never got horribly bad ... but it was bad enough. They didn't want him to totally fall apart when they didn't have to.

By midnight, all his symptoms were gone and he slept back at baseline. Oh, and from midnight until now (11:30 am) he's again had nothing that needs to be vented in the gtube. I'm telling you ... it's night and day with him on and off food.

So there are two questions to be addressed. 1) How is milk ending up in the g tube when that is not "possible"? And 2) What can we do to give him a reliable source of nutrition?

Waiting for the plan.

The plan came today in the form of more questions. I'm smart enough to have done the research to know what this eventually comes to if we can't find feeds that work ... TPN... which has it's own set of new, very serious problems. So basically that means we'll try ANYTHING to make sure we exhaust ALL the options prior to giving up.

I'd done some research that seemed to indicate it's possible that his reaction is allergy. He does get congested instantly, etc. So I asked the Doc... is that possible? He didn't think so based on the symptoms but certainly worth a try until we can figure out a solution.

Meanwhile he's on pedialyte only. So he's hydrated but getting basically 0 nutrition and 0 calories. Can't sustain on only water for too long.

6pm... started the new formula. One hour in, we already knew it wasn't going to work. Same reaction as last night (just minus the congestion).

Here's the biggest symptom of concern. We put formula in the J tube. It is supposedly not connected to his G tube in any way (as verified by several xrays). So things put in the J should not end up in the G. Why is it bad to have things in his G? Because his G (stomach) doesn't empty. So I even have to drain any stomach acids, saliva, etc. And that is MINIMAL.

For perspective, in the 18 hours today that he was on pedialyte, I drained 20 ccs of liquid and 750 ccs went in during that time.

But once on formula: in the 3 1/2 hours he was on formula, 149 went in and 168 came out.

So he's LOSING fluids by being on formula?!? How is that even possible?

By 9:30, they called it a failed experiment and turned it off and back to Pedialyte. We'll regroup tomorrow.

Oh, and just for fun, about 4pm, he started scratching like mad. I took off his hospital gown and sure enough, he was covered in a rash and some hives. The only change that has happened that could do that is a change in his motility drug. (It's a low dose antibiotic.) The one he switched us to is "Virtually" the same. But clearly, it's different to Manny! So we got benadryl ... and he got GRUMPY PANTS. Yikes.

So poor little guy ... he's had a 24 hours.

Many of you have asked what has to happen for us to leave the hospital ... he has to have a way to eat that doesn't make him sick. Sounds easier than it is.

Then and Now

2011-10-06T20:29:00.001-04:00

How's THAT for a blast from the past? This was Manny at 11 months old, only 6 weeks after we had him. It's our first trip to the hospital, the one where we were told to make funeral plans and went home with Hospice and a DNR.

Thought it was about time to remind everyone just how far he's come since then. And we can never stray from the knowledge that God the Creator of Heaven and Earth needs to be praised daily for what He has done in Manny's life. I truly believe to the core of my being that Manny is still drawing daily breath because of the prayers of the Saints. (Most of whom have never met him and only know him through this blog.) I am overwhelmed!

Now about today. The operating theory is ... what if he can handle some food and some tummy rest? So we had to verify if he could handle pedialyte. So for the past 24 hours he's been on pedialyte and YES. He can handle it. He's the same on pedialyte as he is on IV fluids (which they consider "baseline").

So now we have to see how much formula he can handle before he has troubles.

6pm we started formula.

7pm, he's already showing signs of "distress". (oy!) For those who want to know those signs, for him: it's excessive sweating (head), 60 ccs of stomach contents (in one hour vs. 0 in the past 24), increased saliva, coughing (likely due to increased saliva). Also his heart rate is already up 20 beats per minute. (He was about 110 and now is in the 130s.)

Meanwhile, many of you have asked about Kaley and how's she's doing. First, she is amazing. I couldn't possibly express the gift that she is to me. I can leave the room to get ice and water without him screaming. I actually left the hospital for about an hour to go to Target to get a few supplies (like toys, food and a bed for her). And I felt TOTALLY safe about it. I would have NEVER been able to do that without her. (I'd just do without.)

Kaley is homeschooled and I found the most marvelous book in the gift shop that has all the subjects in it and she thinks it's a game book (so shhhh ... don't tell her). We're having a blast with it and she's staying on schedule basically with curriculum this way.

She also plays with Manny. They have so much fun together. Bubbles, play doh, stickers, trains, etc. She's amazing. I think she thinks it cool to have a little "Mommy time". She'll be 12 in a month and I think we'll always remember these times together. They're not completely torture to her ... she actually WANTED to come. (And I try to make it pleasant so she feels she made a good decision.) So when you think of us, pray for Manny's healing and my wisdom/decisions. But also pray for extra blessings on this special little angel we call Kaley.

Every now and then (after a week in the hospital) you get a little punchy ... here's her tonight with her "Olive eyes".

Already been here 5 days ... can you believe it?

2011-10-05T23:16:00.000-04:00

Not much happening today.

Dr. Lawrence (GI) came in to check on Manny's night. He's stable but there are definite noticeable differences of Manny ON food and Manny OFF food.

These are symptoms that were here when we arrived, disappeared when the food was stopped and returned when the food was resumed.

Excessive sweating (especially the head), increased saliva (enough that he is pooling and trying not to aspirate again), choking, crackling/wheezing in the chest, increased heart rate, increased respiratory rate, mouth breathing. Now none of this is dramatic yet... but it's certainly noticeable.

We had a visit from some of the Gator athletes. Swimmer, volleyball player, soccer player, soft ball player. They couldn't come in the room so they stood in the hallway and we brought Manny to the door in the wheelchair. Manny was NOT happy. I think he thought they were going to do poking or prodding or something who knows. Then I told him that they play ball and he said, "PLAY BALL ... OHhhhhhh". And he started "dancing" in his chair. Very excited. They gave us a poster (a volleyball one since I played volleyball in college too).

Later in the day this lady, Margaret, comes in and asks if I know Elsa. (I've mentioned her many times before ... she and her hubby Rich always bring us Balloons and Fruit when we're in the hospital!) Anyway a mutual friend of theirs called and asked if they could bring their therapy dogs to visit us.

So "Bud" and "Weiser" (HUGE golden retrievers) were at our door. Now Manny couldn't touch them and vice versa. But they got to see each other. They were panting quite heavily and it was hilarious when Manny would imitate them! hee hee heee

About 4pm, Dr. Lawrence came in and was sooooo excited ... they have a plan! They'll do some higher calorie formula, some IV and some pedialyte. They'll also do some basic blood tests while they're at it (since he has to get a new IV anyway). I'll be interested to see if the pedialyte has the same effect as the formula... so we'll know tonight.

Once we find a combo that doesn't stress him out, we can go home. I'm sure we'll have to tweak things along the way. I love that this doc is concerned that he's stressed at all by the food. Manny should be the same ON and OFF food. And right now, that's not the case. If the volume issue can fix things, that's easy. If not, we move on to tougher things like TPN or Gastric Stimulator. We also still might need to have that salivary surgery since airway is the most important. We'll see.

Listening to music on Kaley's PSP

So at 8pm the night nurse came in to take some basic blood tests (they hadn't done that yet this trip) and reinsert the IV. It only took 5 nurses and 3 attempts before they got it! He was amazing.

About 10pm, I noticed the slightest amount of formula in his stomach. How ironic because we're taking him off formula and switching him to pedialyte over night anyway. So ... since it's clear, not sure how I'll tell it's saliva vs. pedialyte.

Help has arrived

2011-10-04T16:25:00.001-04:00

The night Surgical resident just left. he's the same one for the past 3 nights so the only consistent doctor we've seen. His dr jacket actually says ENT on it and he's on a surgical rotation. So I tried to impress him with my ENT knowled...ge (like last week and I went to the ENT and they suggested tying off the Parotid glands and removal of the submandibular glands) and it piqued his interest. Also, tonight Manny's already increased in his salivary output just in the few hours he's been back on feeds ... enough so that this ENT noticed it too. I then threw in my story about Zoe having a parotid gland duct fistula (apparently that is soooooo rare, less than 100 in the world we're told). And every ENT so far has been very impressed with that... this one was no exception.

So after I buttered him up with my ENT knowledge, I told him that I was usually happy with the conservative approach but in this case, we've BTDT and this isn't going to get to the bottom line issue. I also asked him questions about his thoughts on the articles about foregut dysmotility in neurologically impaired children. (I knew he didn't know about those studies, but I also knew this would send him to the internet to look it up.) If he does look it up, he can be the "hero" tomorrow at rounds when he has this bright idea. I won't even out him if he does!

I tell you ... leave me in a room for too long and don't let me leave and I'll come up with all sorts of devious plans apparently!

5:30am, I hear this doc outside of our room talking to a group of people. Then they leave. I knew what that meant... we were no longer a surgical consult. I had a feeling (and later it was confirmed) that they recommended our discharge.

7:30am, 3rd year resident comes in (same one as yesterday). I knew that he would be in charge of this case during rounds so I gave him all the good info to help him out.

10:00am, that resident came and got me and asked me to join them for rounds in the hallway. I walked out and there were like 20 doctors and nurses. Some I've seen and some were new. The resident presented the case and did a nice job. I was silent. The main attending was right beside me and she starts talking "out patient" following of Manny... ie. Discharge and trying a few simple things that we've already tried. I bit my tongue. (I already had Plan B: To stay nearby and bring him back when his stomach freaks out again.)

Then this new man pipes up and says, "I'm GI". And I said, "Hi GI". He started addressing the attending that it's premature to send him home without a reliable feeding source. YIPpEEE!! Someone "gets it". He says to the attending, "Let's assume Tampa tried all those things, right?" (looking at me) to which I replied "Ad nauseum".

He asks me multiple questions and we start a dialogue between the two of us. He can tell I know a thing or two, that I have tried many things that they were suggesting and that this is not straight forward. Everyone else is just standing listening to the conversation.

He decides to try him on a new med. I ask about the effects of it on his c-diff. He asks about his heart. I tell him we have a cardio consult for next week. He orders an EKG and echo. The attending suggests that he seems to be stable (to which I replied that holding feeds is a MIRACLE CURE). He caught my tongue in cheek subtle passive aggressive reference. He said that there was no need to recreate the horrible symptoms. More questions.

Eventually, he attending again asks how soon until we can be discharged ... and he says that he wants to observe him for at least 2 days with the new meds (inpatient). Then if there's no effect, he will consult surgery Dr. Islam for a consult for a possible gastric stimulator (often called a gastric pacemaker). And it wasn't until THIS POINT that the rest of the team started to catch on ... OH ... there *IS* something going on with this baby!

Eventually, he and his assistant and I go into our room where Manny is and he closes the door - leaving all the rest of the docs outside. It was at this point that he started asking me about Merosin (and at this point, I'm the best expert he's got as he's never heard of it of course). I offer what I have such as the contact info for some of the Muscular Dystrophy docs (including the one who wanted me to see THIS doctor), the standards of care article, the doctor from LA I've been emailing, etc. And he takes it all. (That's a first by the way!)

I could see his brain spinning trying to come up with new ideas, versus trying the things we've already done that didn't work. On the table (all new ideas) are to see what he CAN tolerate in terms of volume and then supplement the rest with TPN. So like maybe feed him one day and then TPN the next or half and half one day. Maybe he can handle 2 days before needing supplemental. etc. I DO think it's a volume issue (as indicated by the fact that it takes a few days of build up before he starts the horrible retching).

Before one hour was up, we had an EKG and an Echo done! Can you imagine?

EKG ... he thought the "stickers" were way cool

Echo... not a fan of the goop on his tummy

About half an hour later, Dr. Lawrence, the GI's assistant came in to get a more detailed, thorough history. She was awesome. Friendly, caring, intelligent. She actually READ the standards of care. She told me they had already batted around a lot of ideas and that they were researching.

So now I sit in my room, breathing a hugh sigh of relief. I have HOPE again. I have someone who thinks of this as a puzzle to solve and I have the feeling he is not used to failing.

His new Spongebob Pillow case as he plays with cars

Tired, frustrated Mama

2011-10-03T23:13:00.002-04:00

The night was (relatively) quiet. Manny had napped during the day so he was fine. And then at bedtime, he fell right to sleep ... but then the interruptions started. Respiratory came in. Back to sleep. Nurse came in. Back to sleep. Tech came in ... wasn't ready to go back to sleep. (But *I* was!) So by the time he WAS ready again ... I was about to pass out. I'd had basically no sleep the night before. Kaley was still awake next to me on her air mattress, watching a movie.

The nurse and tech were pretty stealth. Baby didn't wake up much for pain or repositioning.

At Radiology, waiting the test, wearing the new Tiger shirt

6:30, the WHOLE Surgery team came in. I could hear them in the hallway discussing the case before they came in. But darnit, only some peoples' voices carry enough to be understood. I think they were just helping the new people catch up. I saw several faces we've been talking with for days now and some new ones as well.

We will be going to do an Upper GI fluoroscopy this morning. He's had one done before back in February. It will be interesting to see how/if anything has changed. Which makes me think, I wonder if they would like the original study for comparison. I'll ask.

And in the meantime, we wait. He's starting to get a tiny bit grumpy late yesterday. Next will come weak unless they can figure this out quickly or switch him to TPN or something more than "water".

Every person who comes in is asking how he's doing. Truthfully? FINE! I tell everyone that they have found the miracle cure for his situation ... to just stop feeding him. (I know, I know ... I have a twisted sense of humor for sure!) And the scary part is ... that IS an option for real. I don't think we're there yet.

Manny with a child life volunteer and his new balloon.

10am we head to the GI study. NORMAL.

What? (sigh)

Don't get me wrong, normal is great. But all it means is that we still haven't found the problem. Apparently there were 2 different interpretations of the test results from the other day. One group of people said it was the J in the G and loose Nissen. Another group said all was normal. (I wasn't told that.)

This test shows all is going like it should. (aaauuuugggghhhh)

Now what?

They are going to start feeding him as per home. Last time we resumed feeds, it took 24-48 hours before it backed up into his stomach. Hope this time it doesn't take as long! They need to see this. So I'm actually HOPING for him to have troubles, to retch to have feeds in the wrong place. Ugh.

4pm ... half feeds started for 2 hours. Then increase to typical feeds of 50 per hour.
4:15... the surgery team came to tell me the results of the earlier tests (I already knew of course). Their plan of action is to start feeds and observe him. Really? The Pediatrician already decided that and we've already started them. I asked questions about dysmotility considering his neurological involvement and non-ambulatory state.

The lead doc suggested instead that we would do things like higher calorie formula and less volume. (By the way, that won't be a solution ... know why? Because he's at the minimum number of CC's per day for his minimum level of hydration... but I didn't point that out yet. I will if that's what they actually do. I happen to know that off the top of my head that he needs 45.3 ccs per hour to have full maintenance fluids. So reducing the volume of calories will make me just have to substitute water for hydration. So how does that help?) And he said we would just play with the amount and timing of the formula. (Trust me, that is NOT what is going on!) He used the cooking analogy that it might take time to get the recipe just right.

When I again brought up the idea of "what happens if that doesn't work?" He also said that he will discuss with his colleague (who is like the inventor of the gastric stimulator) and see his thoughts. You have to understand ... I LOVE conservative. But you also need to know ... we've BTDT. We've TRIED all the combos of timing and volume and amounts ... that is not what is going on. I have been doing the conservative approach for far too long to do this route again. It's pointless.

And so we wait... we wait for his colon to fill up beyond the point of where he can't handle it. OR they discharge me before it shows up.

Now it's bedtime and he's starting to cough just a bit (that's been gone since he's been off feeds). His mouth is again filled with extra saliva (that was gone too). Still no sign of formula in the tube but ... it's just a matter of time; something I don't have much of before they send me on my way with that knowing pat on the head.

I've been frustrated all day. Researching. Finding issues that I think really "fit". There's the one with the dysmotility issue that is overlooked often but quite common in kids with neurological impairment. How about we bark up THAT tree?

Tired, frustrated Mama signing off. Hoping to dream of a solution.

Getting Settled In

2011-10-02T22:23:00.001-04:00

So why has it been 4 hospital admissions in one month? That speaks VOLUMES to me. Not sure what it says, but it certainly is saying something. For the record, I think we're all "over it".

Yesterday was fast-paced, full of phone calls, driving, tests, admission to the hospital, talking to 300 doctors.

Today? Crickets. Yes, I know it's Sunday and nothing happens on a weekend in a hospital.

So I have worked on making life here more bearable. First, I figured out how to get the internet up and running. (They have a pamphlet that shows how to do it, with user id and password (case sensitive). Problem? It's not right. I go to the nurses station and ask if there's a secret or if it's been changed or anything. She tells me, "You have to type it EXACTLY like it's there." To which I tried not to be snotty back. Anyway ... I played around with it long enough and actually landed on the right combo! (Yes, I told the nurse later.)

Next? We got one sleeper bed that will work for tonight.

Then? Discovered there's a Wendy's on campus and it was not too far away. So I dashed down and got us all sorts of food. Kaley and I ate only one meal yesterday (lunch) and didn't get breakfast today. So we were hungry. Thankfully there's a microwave and refrigerator.

So with access to the internet, a place to sleep and lunch in my belly, what more could we need? Snacks, toys and a bed for Kaley. There's a Target around the corner! Never left the baby and Kaley before with no supervision. (And I've only left them one time WITH supervision.) But we were in need so off I went.

45 minutes later, I was back with all we need (and a bunch of stuff we DON'T need).

Manny with a new PlayDoh Dog, Kaley took the picture

Got to testify to and encourage a mom who was here to do respiratory therapy for us. Her daughter is newly diagnosed with a complex syndrome. She's in the early stages of grief and loss and was searching for wisdom, guidance, advice, comfort, courage. God provided it all.

Not singing, he's crying... but 2 minutes later, he was sleeping through the CPT vest

One of the Surgery residents came in and asked how he was doing (grumpy from lack of food). And the only news is that they have scheduled the next test for tomorrow morning ... and upper GI fluoroscopy. It's a test to see how the esophagus, stomach, nissen, etc. are all doing and to see if anything is abnormal. Not sure why this test exactly (neither was he ... he's new to the surgical rotation and I had to help him pronounce Nissen Fundoplication). But that's OK since he's just the messenger He's not doing the test or interpreting it. Everyone's got to learn somehow. (Now don't get me wrong ... when it comes to dangerous procedures and such, I insist on the best.)

I guess I should mention ... this is a teaching hospital (associated with a college) so lots of people in various stages of learning are coming through. There are pros and cons for sure. With a regular hospital, you get one specialist, usually well trained and having specialized for a long time. They have BTDT. They know the way things go. But the other side is that they have limits to their knowledge/experience. There's only one point of view and if the person isn't willing to learn, they won't. With a teaching hospital, you get a multitude of ideas, thoughts. But you also feel like you're educating people (Hand holding a bit). And you have to tell the same story 100 times. But ... personally, I like this type better as I find it easier to work with hungry "young beavers" who are looking for a way to impress their boss versus working with an "old dog" who won't learn new tricks.

The interesting thing about Manny is .. his diagnosis and current condition are pretty rare. So lots of people want to come and take a gander. I was told there are only about 100 kids with Merosin Deficient Congenital Muscular Dystrophy in the US. So most of these people have never seen and likely will never see another case of it in their lifetime. And at a teaching hospital, that's a big deal. Then throw in the unusual anatomy and current GI complications, he's a virtual jackpot! (I've been thinking of Grey's Anatomy a lot during this visit as it's about a teaching hospital and their up and coming surgeons ... the people I am dealing with.)

Anyway ... it's bedtime and we got Kaley's airmattress blown up and she's happily laying on it tonight.

And finally, you have to realize I live in Florida and don't need a lot of long sleeved shirts. I only have a few. And for some reason, it's always cold in hospitals so I pack a long sleeved pj shirt. (Did I mention I always keep a hospital bag packed? And for some reason, I always pack the same one.)

As I was getting ready for bed tonight, it HIT ME! The answer has been right in front of me all along. As I sit here typing this tonight, the irony is very strong.

Maybe I should just let the picture speak for itself.

Most of you will recognize this. For those who are not college football fans, this says "Football" and is a picture of a Gator. As in the University of Florida Gators. In Gainesville. (Are you getting it?) I am currently at their children's hospital!

So every night that we've been in the hospital for the past year as he's been suffering, I've been wearing this shirt. Prophetic? Maybe. I've been praying for answers ... and I had one with me all along! Now I'm wondering how many other things are RIGHT IN FRONT OF ME that I'm missing.

The continuing saga ... but with hope

2011-10-02T12:19:00.001-04:00

There is ABSOLUTELY no way to be able to catch up thoroughly so summary will have to suffice.

In August, Manny started having troubles with major retching and respiratory issues and we landed in the hospital with atelectasis. Released. Eventually, the tube popped out and we waited 4 days for a new one. Still retching. Released. Tube seemed out of place so back to the hospital. Tests showed it was in place. Released.

Frustrated Mama.

Each doctor seemed to think it was a different body part than the one they were in charge of.

For the next 1 1/2 weeks, I did a dance. A very, very dangerous dance. Food was ending up in his stomach (which to him is lifethreatening). So I would have to vent that out so he wouldn't aspirate too much. But if I pull too much, he'll end up dehydrated.

GI was convinced this wasn't a GI issue so I rethought the whole thing and decided ... if the retching isn't coming from below, then maybe it's actually choking and it's from his head/throat.

I go the the ENT. He sees a small episode and looked in his throat ... tons of fluid and he is aspirating. He said there are only 3 ways to deal with secretions that can't be managed. 1) Medicine (such as atropine) but we're way beyond that with him. 2) A Trach. 3) A surgery to tie off the 2 parotid glands and remove the 2 submandibular glands. And he suggested we go with option 3.

I was in shock. I even posted on Facebook that I had news but couldn't share it yet.

So with that news in mind, I started to rethink the problem. The retching can certainly be explained by aspiration but why is there still formula in his stomach?? I went back to the basics: The simplest answer is almost always the right one. In this case, the simple answer is human error ... that I'm putting formula in the wrong port. (Let me assure you ... that's not it!) So assuming that I'm not an idiot, what's the explanation? His Jtube is out of place and has looped back into his stomach (again).

I set out to prove it. I contacted a friend of a friend and they suggested the dye test. Pull stomach contents in a syringe and save. Put one drop of blue dye in 5ccs of water. Put in the Jtube. Wait 30 seconds. Pull stomach contents. Compare. If they're the same, then repeat after 5 minutes, then 10, etc.

His results? Before syringe was formula. After 30 seconds it was blue formula. VERY VERY clear results.

I was MAD. Why am I having to figure all this out?! why is no one believing me? why is no one taking this seriously? For almost TWO weeks, I've been putting the milk in there on faith that the tube was in deed in place. I was having a hard time not screaming.

Call the GI ... let's just say he doesn't believe in the blue dye test, is certain the tube is in place and will see me Wednesday in his office. Thankfully he hung up pretty quickly before I lost it on him. I don't want to do that... I believe in not burning bridges.

Meanwhile, every day Monday-Friday, our Muscular Dystrophy Clinic doctor has been calling some GI docs he knows in Gainesville, Shands Children's. Couldn't get hold of them. But that's where he would like me to go. They have won several awards and were top 5 in Pediatric GI in the nation.

Dan, Manny and I go to dinner at friend's house (Rich and Elsa) and they ask what is going on. I tell them about the whole thing. They used to live in Gainesville and Rich's brother Bill still lives there. So he called him. It was Friday night about 9:45. Turns out, Bill's wife plays tennis with a Pediatric Doc at Shands.

Friday night, I am very conflicted about what to do. I feed him, in faith, basically. His heart rate is erratic ... a sign of dehydration. He's not peeing. We have very little time to figure this out.

Saturday morning, Dr. Thompson (the friend) calls and asks what is going on. I explain. She calls the ER attending, the surgery team, the GI ... all believe we need to get to an ER ... soon. They work out that we can come there.

So Kaley, Manny and I head up (took almost 3 hours due to the Gator football team being at the swamp).

We arrive before 3pm. They are all very nice and had already been informed about what is going on. They start running tests.

Chest xray shows diffuse fluid, but not pneumonia. (GREAT news).
They do a contrast study to show where the G and J are. And to my shock and horror ... the test showed everything was NORMAL. What/??????

I was in tears. I just knew these people wouldn't believe me either. I just knew that they would chalk me up to being psychotic or something. For about 5 hours, I sat there just praying for answers. Every time a doc would walk in, I would tell them that I just KNEW something was wrong, even if the tests weren't showing it.

Doesn't he look tiny in there? They have a nautical theme and this is the door to his Emergency Room

FINALLY, a test came back. It was conclusive. The J tube is completely in the G. And his nissen fundoplication is not functioning right. Apparently, his anatomy isn't typical. Part of the bowel sits on top of his stomach. So from a certain angle, you can't see that. So they waited 3 hours (when the contrast should be basically completely out) and then put him under xray in several positions. This proved the bottom part of the J is IN the stomach. They only kept doing tests because I was soooo sure I was right. The whole time I kept feeling crazy but kept pushing anyway, going with "gut", "intuition", "the Holy Spirit" ... whatever you want to call it. Thrilled that I was listened to; trusted enough to keep doing tests even though ALL tests showed nothing is wrong.

I just about lost it. I felt relief for the first time! I was right. Now we can formulate a plan.

What is that plan? Stay tuned. I'll let you know when I know. Just wanted to get this all out since many people are wondering what is going on.

Manny says

2011-09-27T20:25:00.002-04:00

Manny: "Cloud"
Mama: "Where do you see a cloud?"
Manny" "Right there. Up in da sky."
Not bad for a 26 month old, huh?

I have a million conversations like this with him. Always amazed at his vocabulary and he's even working on the syntax.

Or how about this ... the other day the Neurologist was in trying to assess his mental state. Manny was playing with a vehicle. Doc asked, "What is that?" and Manny answered "Tractor". (His articulation is poor due to muscle weakness so the doc didn't understand but I did.) The doc asked again, "What is that?" and Manny said more slowly and deliberately, "Trac-tor". Doc was like, "Did he just say TRACTOR?" I nodded with a proud Mama smile. He says, "Not just 'car', but 'tractor'. Wow!" I then handed Manny more vehicles, "Bus", "Truck", "Car", "Train", by the time we got to airplanes and helicopters, the doc was in shock.

The Doc reminded me that he's never seen a child with such extensive white matter brain involvement that was cognitively intact. He said, "If you see his brain scans, you'd just know that this child was in a true vegetative state, not talking." Manny is defying all the odds apparently!

A little later, the nurse was talking about the electronic fish aquarium that Child life let us borrow. There is a clam, 2 fish and a star fish. We had NEVER talked about it. She said, "How many fish are there?" He looked at all of them, pointed to them "One, two ... two bish". I said that I doubted he knew the starfish was a fish. So she said, "How many stars?" "One tar".

The other day we were at a resort and he was relaxing on the lounge chair. He looked up and saw coconuts in the palm tree. But what he said was, "Applesauce". What?? "Applesauce up in the tree." And then I had to make the association. Oh... he calls all things in trees "apples" usually but this time he got confused and called it "apple sauce". I find that especially funny because, well, he can't eat! So food is a little "Mysterious" to him.

Tonight, Dan took him in the backyard to explore. He came in with flowers in his hand and he said (as clear as day) "I have flowers for you." In the other hand is a little berry from a tree (he is back to calling them "apples") and says, "I have apple for you." I think those are pretty darned good sentences!

Daily, this little guy shocks me. If you see Manny on paper, it's "Tube fed, oxygen dependent, non-ambulatory, complex special need child". That conjures up a certain image. And I guarantee that image would not be any where close to reality.

Manny is continuing to teach people about life. He is defying logic. He is a Miracle.

And me? I'm the blessed one who gets to snuggle with him every day.

Tube out? In? What is going on?

2011-09-20T22:03:00.000-04:00

How do I say this?

We're in the hospital again.

You know that GJ tube we waited 4 1/2 days for? By Sunday, it was clearly out of place. I pretended it was not the case but I knew it was. By Monday morning, I put a call into the GI. By 1pm, they called me back. 2:30 headed to the Hospital. 3:30 appointment. 4:45 finally see the doc. 5:30 admit papers in hand. 7:00 headed to our room. (Change of shift, naturally.) 11pm, Manny finally asleep. Kaley is with me again. (My trooper!)

Manny? He handled it beautifully! He's in a great mood. The IV team did his IV. (Only took 3 sticks.) And fluids were finally in at 9:30pm ... so only about 8 hours without fluids.

Dora balloon!

The plan? Wait for another tube. NO, I am not joking. I would NOT joke about something like this. SO hopefully they got 2 when they ordered the last one. This time, the GI wants to put it in himself. He wants to see if there is something they've been doing wrong or something anatomically going on that would cause it to malfunction so quickly. (These are supposed to last about 6-9 months and this will be the 5th in 6 months.)

We also discussed doing some tests... not sure what all they will be but we'll see tomorrow.

Also discussed that it could be the retching that causes the tube to go out of place. So what is causing the retching? He felt it's neurological (based on symptoms) and not GI that causes the retching. And if that is the case, the only thing that can be done is to do a "major surgery".

I have fellow tube moms who feel that he needs a separate J and G tube. (Means 2 holes on his body.) But no way for this to happen again. And these tubes can be reinserted at home, not at the hospital, etc. All sounds great to me.

For some reason, they don't want to do a "straight j" placement, they would only want to do the Roux-en-Y procedure and that is MAJOR surgery he said. So tomorrow, I have a surgery consult to discuss. I'm not clear on why the "staight j" would not be an appropriate surgery.

But either way ... I hate these choices. They all stink if you ask me. I'd like my baby to wake up tomorrow asking for a cheeseburger and we walk out of here.

The night was uneventful. (Love having a nurse and a nursing assistant ... no machines beeped all night! They were on top of things.)

7am they came in to take us to Radiology for a small bowel series. Barium in the tube and watch it (via xray) go out. The test came back Normal. The tube was in place.

NOT the news any of us expected! Why? Because how does milk end up in his stomach (in large amounts) if the tube is in place? Very, very strange mystery. AND why is he continuing to retch enough to cause respiratory distress?

waiting for a clean gown... saying "Cheese" and playing with Diego (his fav)

So I sit here at 12:30pm and I am questioning my sanity. I KNOW there was tons of milk in the tube. How do I know? I collected it and have it with me! And I KNOW he has these desats due to retching. How do I know? Because I have video of several of the episodes.

But as I sit here, I think my docs know me well enough to know I didn't make either of these up ... but as a sane person, I also know they've GOT to be considering that possibility or that I messed up or made a mistake.

Meanwhile, he hasn't retched today. His tube is in place. Maybe I just take that news as great news and go home. Part of me wants to do that, the easy thing. Just bury my head and pretend that there's nothing wrong. And yet, I KNOW that later today or tonight or tomorrow or soon, we'll be right back where we started... with milk in the wrong place and retching.

But I also question how much "fight" I have left in me! And if this is the time to PUSH, or just go home and regather myself.

Up until the MRSA came back negative, he had to wear the mask when he left the room to go get his IV.
He is not a fan of the mask.

So while I'm sitting on the ground playing in the water bucket with Manny, I hear a familiar voice in the hallway. Dr. Cartaya. I'd asked to be on his service but the GI felt he didn't need it. I opened the door and he saw us and was in shock that we were back... again! I ran a few things by him. He had the same questions/concerns I did. Seems the Roux-en-Y j tube placement is very aggressive and he's wondering why that would be the next step versus the simple straight jtube placement. (Me too.) He also wondered why the retching and what could be done (his theory is nothing). And why the heck the milk would be in the wrong place. (He was as confused as everyone else.) Seems Manny keeps everyone guessing!

4pm, Mom and Dad came to help. I had previously scheduled to be on a live TV show to promote cleft awareness ... and the set is at home (45 minutes away). So Kaley stayed here, they stayed and watched Manny. I booked it home, did my hair and makeup, ironed a shirt, ironed Zoe's shirt and did her hair, and with 1 minute to spare, got sitting for the interview. They say it went well (Zoe wouldn't talk, little stinker). But the live streaming will be available as early as Wednesday ... will post the link if it's not too horrible.

8:30, back to hospital. Manny is asleep in my Mom's arms. Apparently, a surgical assistant came by very late this evening. Not sure what all was discussed as Mom/Dad don't have all the questions to ask him, etc. So apparently, consult will come by again tomorrow, trying to schedule it when the Neuro is here.

I have no clue the plan. I just know that when he retches ... it's bad. It's scary. It's life threatening. Some moments he's fine ... even a whole day here and there. But even one could prove to be "too much". I feel like we're missing a critical piece of the puzzle.

But for now, little bit is sleeping. Milk is going the right direction. No retching. So all in all, it's a great night.

The rest of the hospital stay story

2011-09-15T21:54:00.001-04:00

(Written Tuesday night after the tube was placed but we weren't discharged.)

Since the last post, I've been doing some heavy duty thinking. I was very, very patient with how the whole tube debocle went. And clearly, I used up all my patience on waiting on that. Because now, I am out of patience.

As you know, he got his tube in at 3 but didn't start eating until 9:30pm. Why? Because they forgot to write the orders for food, it just said "Fluids". The next problem? He started retching and desatting.

Finally got the OK to start feeds.

Next problem? About 10:30, I went to change Manny's diaper and it was wet on the outside. His bed was soaked. Why? The nurse had not put his milk into his tube correctly and it was laying in his lap. Seriously?

Next problem? When he is on feeds, he is suppose to have erythromycin (it helps the motility in the stomach). He started feeds but he didn't get that OR his Prilosec (for GERD). 2 more "over sights".

Next problem? He had a rash/infection starting on his gtube area (I told them) and they were to write the order for some bactriban so it doesn't turn into cellulitis. I reminded them 3 times. FINALLY at 11pm it showed up. (Only took 8 hours. sheesh)

So now the issue is next steps. They really should not release a baby to go home with the kind of symptoms he's having ... his retching causes respiratory distress. But I have a feeling that they will just overlook that and discharge him tomorrow. Which is fine ... because I'm leaving tomorrow one way or another. I have lost almost all confidence in this team today. I don't know if the doctors got the messages of what was going on or not. I have a feeling the nurses didn't relay the messages. (Just a guess as his doctors are usually right on top of things.) I think everyone was soooo relieved to get that stupid tube in that they lost sight of the patient.

I love the nurses up on the 8th floor. Somehow down here, we're not a priority to the nurses. We're in the oncology wing and there are very sick little kids around here. So I guess a kid with desats and respiratory distress who hasn't eaten in 5 days is way down on the totem poll. (Or maybe I'm just in a bad mood.)

I have no clue why this has been soooo botched but it's quite bad.

(Written after I got home and had some time to reflect and synthesize.)

Tuesday night I got so upset that if I'd had a car, I would have left in the middle of the night. I was THAT upset. One time during that night, the nurse came in with water (flush) bottles. (For those who don't know, you have to Flush tubes with water every so often ... need syringes and water.) I reminded her that she never brought the syringes and said she's get them. 2 hours later she came back (without syringes) and started writing on the bottles. She said that JCO was coming by in the morning and they wanted to make sure everything was perfect. What about the syringes. Oh yeah. (By the way, I'm STILL Waiting for those syringes.) So basically, patient care was non existent.

She said we'd likely be discharged the next day since he was tolerating feeds. I was like, "I am for sure going home tomorrow since the doctors don't seem concerned about the retching." She was like, "Yeah". (She thought I meant that THEY weren't concerned so *I* shouldn't be concerned. But really, I was like ... I'm OUTTA HERE BECAUSE they are not concerned.") She was a few fries short of a happy meal though so it was all lost on her.

I was ticked. But decided to channel it all in writing a letter to my pediatrician. I left out ALL the emotions and only put in fact after fact. The end was a plea of what to do next. That gave me enough focus to finally let it go and go to bed.

The next morning, I packed my stuff and waited. By the morning, I'd had time to process and realize: What is it EXACTLY that I'm fighting for.

1) What to do when he is retching?

Is it causing permanent heart/lung damage?
When should I bring him to the ER?
how do I know when it's him not tolerating the feeds versus the regular retching?
anything that can be done about it?

2) What happened to the second tube so we don't do this again?

Eventually, Dr. Cartaya got there. It was the PERFECT doctor for me. He asked if I was ready to go home. I pointed to my already packed bags but that I had a concern. I asked him those questions above and got answers. (And by the way, he WASN'T notified of the retching!! Next time, I call him myself!) We discussed all sorts of things (maybe I can include those in another post). But basically, there's likely not a lot we can do during these episodes, probably need BIPAP to support him. And no one knows about the second tube. (ugh)

He left and I felt a peace. In the night, I'd already written the pediatrician. I'd already written the specialist doctor with Manny's condition. I'd already written the muscuar dystrophy clinic for recommendations of doctors. etc. So I had a plan in works.

He came in a few minutes later and said, "Change of Plans ... you have to stay another week." To which I replied, "I will be needing one of those AMA forms to fill out." (Meaning I will be leaving Against Medical Advice.) He laughed! He was just teasing of course and was only in to ask if I needed refills on meds.

He hugged me and patted Manny on the head. And we were discharged. The nurse came in and took out the IV.

There were more debacles ... like his feeds are supposed to be continuous. I told the nurse that his food was almost gone. I had no formula in the room. He never came back. An HOUR later, he came in and I reminded him of the missing formula and he went to hunt again. He never did come back with formula until I was walking out the door.

Kaley and I had bags in hand and were walking out the door when the GI's Physician Assistant came in. She apologized she didn't get here before we were discharged but said Cartaya told her we still had concerns. I told her about the retching and desatting ... her eyes got HUGE and she was clearly upset that we'd be discharged in that condition. I was in shock too ... but also ready to get out of there. I told her the story and to put her brain around it. I'll go back next week for a follow up and maybe they'll have a plan together by then.

Soooo glad this hospital visit is over. And remind me, don't ever do a hospital stay when JCO is in town! Run for the hills.

Rollercoaster Day

2011-09-13T21:20:00.001-04:00

Woke up this morning to a baby getting a finger poke. Amazingly, he barely cried. And the CMP (what they ordered) was "basically" normal. A few items better, a few worse but overall about the same. So no worse for the wear ... amazingly!

But ... no tube!

Dr. Cuenca (One of the GIs) came in today and calmly (with smiles) said that she has taken this issue all the way to the administrators of the hospital. Yes, she knew that JCO was here this week ... but this is not right. She asked Manny what color pen he was holding. "Red" . She then walked out to the nurses station and began to give the third degree to several people on the phone!

Kaley ... the world's best helper ... still has an amazing attitude and a helpful heart. Today, she was combing his hair. What do you think? What a handsome dude!

12:00 Dr. Cartaya comes in and discusses how he's doing overall ... which is amazingly well. And leaves. About 5 minutes later, he pops his head in the door and yells, "We have a tube." And closes the door! What?!? Yippee!!

12:20 they are ready for us to go down.

Arrive in IR ... not quite ready for us afterall. No room for him. But that's OK, we had his wheelchair and some toys.

Eventually, Alisha came to get us. There are two options for placing this tube. 1) Anesthesia where they knock him out, the whole sch-bang. (comes with many risks). 2) Alisha gives him some mild sedative just to take the edge off and does it with him awake. I much prefer option 2. Sometimes I'm not given the choice ... today I was.

So Alisha takes him away and he cries (much separation anxiety) but I know it won't be long before he gets meds and chills out.

1 hour and 15 minutes later, she comes out with him. He's groggy and chill but fine. As we head up to our room, she tells me it was very difficult to get it in. Maybe scar tissue. He has weird turns and twists in his bowel. And she also thinks that this tube might not be quite long enough either. This is the first time we're going from a 22 to a 30. The only other length is a 45 (which she said would "Be out his butt"). But his tube was clearly out of place for a long time she said because the hole from his stomach to his intestine was reclosed.

So now it's 3:15 pm and we're back in our room. We're waiting for orders to actually USE the tube. Seems the orders weren't written to start feeds. (Not sure why ... if it's oversight or if they purposely wanted to do something else first.)

I know she wanted to talk to me about using Reglan. And I'm just not ready to go there yet. The potential side effects are just too big and possibly permanent. So I need more time on that.

I also need to find out what happened with the second tube they were trying to order. Did it come? Did they find a new way to get it to us? What happened? Must find out ... can NOT do this again.

....

OK now on to a new subject. I called the Pulmonologist just now to get the results of the sleep study. "Basically Normal". What the heck? Guess it's great news ... it's just CONFUSING news. Apparently, the respiratory symptoms were COMPLETELY caused by the GI issues and have basically no bearing or effect on his respiratory system. Seriously?? He desatted a few times but not too bad or for too long. Low 80's but never stayed down for more than 5 minutes.

So don't get me wrong. This is WONDERFUL news. It just caught me off guard. It shows his lungs have not been compromised. And that is PRAISEWORTHY news!

And just for fun, while I was typing this ... he went into respiratory distress - retching, etc. (And no, they haven't started feeds yet). Nurses came running from everywhere. I got it on video as "proof" of what he was doing. It all only lasted about 3 minutes. But it sure gets your blood pressure going!

We thought it was all about food in his tummy ... but clearly, it's not. There's nothing in his tummy.

Over the next hour, he's done this 3 times. His pulse goes way high, his sats go way low. He stops breathing. Now what?

So it's 5:15 and he's napping. Those retching episodes always leave him exhausted. (Back last year, they thought these were seizures because he looked so "spent" after.)

His retching has slowed down but it's not over and he still hasn't been fed. He did NONE the days without the tube in.

7:30 Dan arrives with the kids and dinner. What a welcome sight! The baby is soooo grumpy again. Yelling "OWIE" and not telling me where. He's not been like this since his tube came out on Friday. We sat and discussed our options. They had to leave at 9 to get home to bed as the kids have school tomorrow. (They usually go to bed at 7pm and it's a 40 minute ride home.)

9pm Just told the nurse to call again. Now. We're stuck in limbo. He's doing less retching (only one this hour). They still haven't started the feeds. They were SUPPOSED to start feeds at 3pm when he came back from the procedure but the formula hadn't arrived from dietary. So while we were waiting for it, he was doing the horrible retching with desats. Now the food and pump and bag are all sitting here ready to go but without the Okey Dokey to do it. He's still on the TPN like he's been on since Saturday. But I'm am about to lose it here.

9:20 Nurse came in and said the doc said to start the feeds on half rate and we'll go from there. At least it's progress. I'm just supposed to notify the nurse if/when he retches.

Tired Mama. Grumpy Baby. Thankful for happy big sister.

No Tube Yet! aaaaauuuugggghhhh

2011-09-12T21:43:00.000-04:00

We were in hopes that today would be the day we could have our tube and go home. That was Plan A. But alas, it was not to be. So we wait again. The tube SHOULD be here by tonight. If it is, then we'll be the first one to go to surgery tomorrow. And then a few hours to make sure it's working. And then home. That's the plan anyway. Plan B.

None of the doctors want to come in here today. Normally, we see the Hospitalist and the GI. But today, they both sent in their assistants. (Even though they were just outside.) I think they didn't want to be the ones to tell us the bad news. (Our nurse told us first thing this morning.) And they are all fit to be tied!

So it's been clarified what happened. The hospital is working their butts off Friday afternoon, all weekend and even today to locate a tube. The DME that carries them is closed all weekend. Seriously. That's it. So the hospital assured me they made the DME send two. They are bound and determined that this will NOT happen again! 5 day hospital stay for a 45 minute outpatient procedure is just insane.

The nurse told me that everyone is asking "How's the Mom taking this?" And of course, they're all in shock that I'm making less of a stink about it than the Doctors are. They're TICKED. I'd rather them do the yelling and let me be the nice one. (Yelling doesn't help anyway!) The staff that know me know that I'm as calm and cool as they come.

So while we wait, we're just trying to keep ourselves entertained.

Here are a few things we're doing:

This is what we call a "hand bath". We played on the floor for about 2 hours. Warm water in the basin. Add floatable toys. Add animals. Add bubbles. Splash. Soak Mama. Repeat. He pitched a huge fit when it was over because he wanted to keep playing. Guess you could say it was a "hit". But we eventually had to get up, Kaley and I could only sit on the floor curled up for so long before our legs cramped up. We have to sit behind him because he can ALMOST sit independently, but not quite.

This is a view of me holding him and Kaley helping hold the bubble wand. He takes the BIGGEST breaths in order to do this. But he's a pro now at bubble blowing. We do it to help him inhale and exhale. He can do this forever too!

Kaley also put him in the bed surrounded by pillows and kept making the bed go up and down. It was a great arm workout for Kaley and a fun ride for Manny.

The rest of the time? We've been writing, doing letters, watching DVDs (especially Baby Einstein), playing on his laptop, playing with cars and animals. I came quite prepared. I knew we'd have to be her until today so I was all set.

11am We get to leave the room! OK it's only for a procedure, but hey ... it's an adventure out of these 4 walls. We go to get an ultrasound of his liver, gall bladder and pancreas. (I expect them to all be normal.) But they're checking anyway. Some of his liver enzymes are always "off". Not sure why.

And while we're talking blood tests, his amylase and lipase came back normal. His WBC is still quite high and several of his labs are "off". Much of it is about muscle wasting though if I'm reading and interpreting them correctly. (sigh)

2pm So I smell this "odd" smell and decide to investigate. Sure enough, his tube area is getting infected. We can't tell if it's from the foley or from the tegaderm. There's redness and I'm keeping an eye on it for now. But I know from his past that he can go from fine to septic in no time. (Long time followers will likely remember THAT!) So trust me, I'm "on it" quickly when I see that.

Rest of the day ... pretty unadventurous.

6pm Manny falls asleep and no way to awaken him. It's tooooo early. But then again, if we have to get up early for the procedure tomorrow maybe it will work out. But what if he wakes up at say 10pm when I'm ready to crash?

7:30, Mom shows up with a Whopper! Yum. Thanks Mom. I know it was a very long day and it just added to your long day to stop here. But it certainly was nice to chat.

8pm, The night nurse shows up and says she isn't positive if the tube has arrived or not. Darnit. It was supposed to be here before now and should have been in the chart. Trust me, many, many people in the hospital are aware of our situation. (And not due to me, I've been stuck in here trying to keep a hungry baby happy.) It's not a good sign. But there's still hope. I'll feel better when I hear the words, "It is here."

Ironically the accrediting board for the hospital is here this week (starting today) and they're all a bit on edge, crossing every t and dotting every i. Ironically, WE are something that has proven to be a MAJOR systems failure. I think they all want to keep me happy and keep JCO away from me.

9pm finally lay the baby down in his crib. He'd been in my arms this whole time. I knew laying him down could wake him up but I also knew I couldn't hold him (or my bladder) all night. So it had to be done. I was successful! It worked!!

And JUST as I was walking away, the Respiratory therapist came in, knocking LOUDLY, talking LOUDLY. She's one I have had before and do not enjoy her. We get into some pretty interesting conversations but tonight it's not going to work and there's NO way she could just come in, do the breathing treatment quietly and leave. So I say (kindly), we would like to refuse all breathing treatments for the night. Thank you.

Guess it hurt her feelings because later, the nurse had to tell me "The RT felt HORRIBLE..." blah blah blah. So I said, "It's no big deal, everything's fine. I am just trying to achieve some normalcy for this baby."

But between all the interruptions, the beeps, the loud people ... it's now almost 10pm and guess who is WIDE AWAKE? (One hint: NOT ME!)

Oh, and the nurse informed me they need new labs in the morning. 5am! You have gotta be kidding me. We talked about him being a difficult stick. Hoping a bullet will be enough and if so, they can do a finger poke. If she does it right, she can get it to drip and not hemolyze. And then HOPEFULLY off to the procedure.

This is Plan B.

Hoping there will not be a Plan C.