May 24, 2012

Things change around here fast

I must get something off my chest: 
Some people should just NOT be night nurses, techs or therapists.  (I feel better now.)

Yesterday, Manny was still too weak to get out of bed and sit in his wheelchair (trust me, I tried several times).  But he was feeling a bit better (he's getting 5 days of iron iv and also iv antibiotics which are both helping).  I was able to keep him awake all day (like normal for home). And he went to sleep at his regular bedtime. 

Sounds heavenly, huh?  Well, that is until TWO hours later, the medical personnel had to come in his room and they were acting like it was 10 am, not 10 pm. Talking in regular voices, flipping on lights (needless ones) and  talking TO him/interacting playfully.  He grumped at them because he was trying to sleep and then they tried to comfort him and then tried to chide him for being grumpy.  When all he wanted was some S.L.E.E.P.

I was whispering.  I was quietly moving around the room.  (Trying to model the proper behavior.)  But they weren't getting it. 

They would leave and he would shut up.  I thought he was sending a very clear message. 

It only took a few hours before they put oxygen on him.  (I felt he was borderline to needing it earlier in the evening but it wasn't clear cut and then it became clear.)  He slept (semi) peacefully for the rest of the night. 

He was only awake about 20 times ... which yes, is a lot, but much better than most of the nights we've had since being here.  He would actually sleep for stretches of about 30 minutes sometimes.  LOVE that. 

So what's the plan?  Today we have Doc's protege as our doctor.  She will come in later and assess him.  If he sounds fairly clear, I am going to push to see how soon we can go home.  Afterall, right now, they are only doing things that I can do for him at home.  I don't want to take him home and jeopardize his life/safety though either.  And I think today it's not clear cut.  So I have to put our fates in the hand of a person whose judgment isn't always in line with mine. 

Our regular doctor (the one whose judgment I do trust implicitly) is gone for 2 days.  This should be interesting. 

Meanwhile, not sure if I updated you on this or not.  I'll give the summary version here.  OK you know how Manny's iron stores were very, very low?  They gave him a blood transfusion which should help (and it did).  Then they did 2 days of iron in his tummy tube. That did NOT agree with him in any way and we're still dealing with the risidual effects of that.  Then he had 3 days of IV iron.  That helped.  I was actually happy with his hemoglobin levels... highest they have been in forever.  But the hematologist came by yesterday and said she wants them closer to normal.  So she started him on 2 more days of IV iron.  Then we will monitor weekly to ensure his levels remain high. 

To be more specific, his hemoglobin was about 9.6 since his last blood transfusion in mid February.  Then it started to decline mid april.  It hit 8.2 and he started to show signs of distress.  By 8 I knew he needed to get his hiney in the hospital.  By the time we got here, it was 7.3 and several of his labs were in "critical values". 

After his transfusion this time he went back to 9.6 so I thought everyone would be happy.  The hematologist started with the iron and it went to 10.8 and I was thrilled.  Hematologist wants him closer to normal range (for his gender and age, it would be closer to 14!)  Really?  Wow.  Again, I repeat that I am thrilled to have someone looking at the labs besides ME. 

10:15am, Respiratory therapist just came in ... even after his breathing treatments he still sounds "coarse" and "diminished".  Those are code words for "we are not going any where".  :(

And I think I told you that his broviac line has the beginnings of a crack on it.  The nurses are FREAKED OUT about it.  Seriously!  They don't want to touch his line.  They keep checking it to see if it's burst or not.  Me?  I'm fine with the whole thing.  I'm careful.  I'm prepared.  In an emergency (like the line breaks) then I know what to do.  I'm not thrilled knowing this thing could blow at any time, but it's just another one of those things that Manny likes to do to keep us on our toes. 


9pm FROM HOME!!! 

OK so that's a lot of time in between and a huge change so I'll try to update what happened. 

Last night I told the night nurse that if Manny did well that I would see if we could be discharged today.  Guess the night nurse told the day nurse.  Then to my shock, Doc was actually on call afterall today.  The day nurse told him that I was ready to go.  So when he walked in, he said, "A little birdie tells me you're ready to go home." 

I told him that if he was the same or better, that I felt I could handle this illness at home.  If it was worse, I would happily stay.  But I left it up to his judgment call.  He listened to Manny and said no better, no worse.  He said that since I am who I am and I have all the same medicines and machines at home (including oxygen) that I could go home!  I actually mostly didn't believe it.  Afterall, if I took Manny into the doctor today, she would likely admit us.  So clearly, he is still very sick.  And of course I know the warning signs to take him back and would. 

They got discharge papers and sent us home! 

The next few hours were a whirlwind of activity.  Driving home.  Getting lunch (FOOD is a good thing!!) 

Then my hospital world and my home world collide ... HARD.  It's a hard transition.  The kids at home are needy of their mother who has been absent for more than a week.  Luke has still been sick and tomorrow will be his first day back to school since I left.  Kaley is still at 103 plus fevers.  (She has the same thing Manny has so no way for him to get it from her by the way.)  House is messy (though sister came and helped out last night, THANKS).  Phone calls to make, mail to deal with, medicines to pick up, dinner, homework, laundry ... you know ... LIFE. 

And on top of it, a baby with mild pneumonia.  And me NOT getting the flu.  (Keep repeating that!) 

Then bedtime ... I had 6 machines to set up for Manny.  Many of which I haven't used in months.  Why?  Because this is his first respiratory thing in months.  So a nebulizer, vaporizer, oxygen concentrator, pulse ox, his TPN, etc etc.  Our room has so many machines in it that Dan decided to sleep in another room tonight. 

So at 9pm, all the kids are sleeping but Manny.  I am about to crash and I realized that I had so many of you left hanging that I owed it to you to let you know the day that turned on a dime. 

He will be on IV antibiotics for the next 8 days.  The home health company sent me the antibiotics tonight and I am going to just hook them up to his broviac daily.  Cool. 

Finally, about 6 pm, got a call from Boston Motility Clinic.  I am in SHOCK.  They said they did want to expedite his case.  They are currently making appointments for December.  But they wanted to see if we could be there June 25?  Uh ... YES YES YES. 

So we will be in Boston for Manny's 3rd birthday (that's June 26... not exactly my plans for his day but plans can be changed).  They currently have us being admitted on June 25 and being discharged on June 27 (if all goes according to plan). 

What is this appointment about?  There are allegedly only 3 clinics in the country that are specialized enough to try to figure out what is going on with Manny's gut and his inability to eat.  IF we even have the POSSIBILITY of getting off TPN, it's worth the shot!!  We must try. 

So there (in a nutshell) is my day. 

Things change around here FAST!

May 23, 2012

He looks great

I must be overly tired because I'm now irritated by a phrase I hear all the time here in the hospital.  What phrase you ask? 

"But he looks so good." 

Some history:  We're in the hospital.  (First hint that he's sick.) So something must be up.  And just because a kid doesn't look like they're dying doesn't mean they feel well.  Some kids have learned to compensate.  Manny feels badly ALL.THE.TIME so he just learns how to pick up and go on.  Just because he doesn't "mope around", doesn't mean he's not sick.  It just means his will to live each day to the fullest is stronger!

Secondly, I'm only irritated by this phrase being uttered by medical professionals.  I know that if a friend says "He is looking good" that means they think he is cute or that they think he looks better for what he is going through or a whole bunch of other positive things.  That scenario doesn't bother me. 

It's when a nurse or tech or therapist says it.  They basically are saying, "Why is he here?  He looks too good."  And then I realize, they must deal with kids who are rarely sick so they haven't learned how to "BE" sick all the time like Manny.  Or their other kids must not have the largest survivor spirit in the world like Manny.  Or maybe their parents pay special attention to them when they're sick. 

But Manny?  He just deals with the new symptom like a pro and moves on.  NOTHING holds him down. 

So when they see Manny, they should be impressed with the strength of his mind and his ability to hold things (like attitude) together when his body is falling apart.

And I'll give you the extent to how strong his mind is.  Remember back in February when he was in the hospital and they were about to remove his gallbladder?  5 minutes before surgery, the Surgeon came in and said that he was acting too well to have a bad gallbladder.  He was not acting sick.  He was not guarding, not tender, not acting like he was in pain, etc.  They decided to do the surgery anyway. 

This is what he looked like about 5-10 minutes before surgery

And after the surgery, the surgeon came in and asked to speak to me in private.  He was visibly moved.  He said he couldn't believe how sweet, and kind and healthy Manny looked to have SUCH a sick gallbladder.  The thing was gangrene and nectotic and had begun to rupture.  

My point?  You CANNOT go by what Manny looks like.  This kid has heart.  He is a survivor.  He is not a whiner or complainer. 

Shouldn't medical professionals know about this?  Seriously. 

Now about you friends, you can feel free to say he looks good.  Because he does! 

This is what he looks like this morning.

As you can see, during the night he needed oxygen.  And don't you love the heart shaped hypafix?  I love nurses that go above and beyond in little ways to help out.

I knew he didn't feel well on Tuesday as he never wanted to get out of bed.  I kept trying to get him up and in the wheelchair.  He didn't want to play ipad, just lay still.  He was coughing SOOOO hard that he got hoarse.  Unfortunately, it's not the kind of cough one needs to keep their lungs from getting pneumonia.  He couldn't clear his throat.  It was just below where suctioning could get to. 

By last night he was just plain exhausted.  I knew he needed oxygen just for comfort and support.  He didn't technically meet the criteria for oxygen though for a while.  I know that the Doctors are working on trying to write the orders so he can get it when he needs it but the written orders were not specific enough to include some of the criteria that he WAS meeting.  I talked to the nurse early in the night about MY goals for oxygen.  My previous experience with oxygen being an "issue".  And told her that if we hit my criteria but didn't feel he hit the Doc's orders, that I would appreciate her calling Doc just to clarify.  She said that would not be necessary. 

Manny was finally sleeping (mostly) peacefully by about 10:30 so I went to bed too.  It only took a little while before she felt comfortable with the decision for oxygen.  And after that, he slept decently. 

This morning, he doesn't need the oxygen so we turned it off but he refuses to let me take off the canula.  I think he understands how that helps him! 

Now we're waiting for Doc and what the NEW criteria is he has to meet for discharge. 

12:30, I asked Doc for our "Escape Plan" and he talked to me about learning how to tunnel out! LOL  Then he compared our stay to a bunch of escaping from jail movies (Like Shawshank Redemption, Escape from Alcaltraz, etc.)  I sadly think there are some parallels. 

He said we can't even TALK discharge plans until he sounds completely clear and his xray shows it too.  He said he gives respiratory illnesses "all due respect" with a kid like Manny.  So ... looks like we're here a bit longer.  (sigh)  But I do agree with him, this is where we need to be.  It helps to have someone monitoring him all night (I can do day easily) and I love having the Respiratory Therapists who come by every 4 hours to do his treatment without me having to even think about it.  And if he were to take a turn for the worse, they have immediate access to better machines and better medicines than I have at home. 

OK and you know how he started on antibiotics?  And how he has a history of c-diff?  And that is triggered by administration of c-diff?  Well, it did.  What does that entail?  Well, for him at least, that means diapers that leak all over the bed every 30 minutes or so.  Poor guy. 

So in summary ... some things are better.  Some things are worse. 

May 22, 2012

What's next you ask?

Sometimes I have wondered why I am where I am.

Other times, it's very, very clear.  THIS hospitalizations is one of those times.  Here are just SOME of the reasons we are here.

1) If Manny wasn't in the hospital, he would have crashed at home and not in the hospital.  Instead, he was here in the safety of the hospital with a doc who knows him well and labs that could point them in the right direction.

2) Prayer: 
So far, I have been able to pray for 3 techs and a nurse.  One tech had a husband in late stage cancer.  She's been sharing the story with me over the time I've known her and it was clear the "end" was near.  Saturday afternoon, we discussed him, his life and legacy and the end of his life.  When she got off from work that night, she knew it was the end.  When she woke up Sunday morning, he had passed.  Asleep peacefully in his bed.  THAT is what she was able to do for him.  To give him dignity at the end of his life.  They had been married for 44 years. 

A second tech (one I barely know), Sunday night was chatting (about 2am) about Tech 1's husband's death and how similar the story is to her Mother in Law.  During the middle of it the conversation, I was struck to pray for the Mother in law, her and her husband.  I didn't know if she would be receptive or not but I just broke into prayer.  At the end, she leaned over (crying) and hugged me. 

The third tech is one I've known for the two years we have been coming here.  She has had many ups and downs.  She shared her most recent ones.  One is a health concern and I had to pray for her.  And (in Beth form), there was a metaphor.  The illness was a physical manifestation of what was going on in her life. 

The nurse (one of Manny's favs) has an elderly parent who also needed prayer.

3) To advocate for Manny.  So many little to large things happen in a hospital, even when things are "routine".  But Manny is anything but "routine".  I'll leave details out for now, but suffice to say that the medical personnel who deal with Manny are kind and caring and knowledgable.  They are also overworked and have MANY patients.  I have just ONE kid to focus on that I am the "expert" in so it's easy for me to catch things.  And I do.

Now ... on to today.  Last night was very, very bad.  Manny's congestion got clearly worse and he coughed/choked basically constantly the whole night.  He was miserable and couldn't sleep for more than 5 minutes at a time.  Nothing helped.  He couldn't be comforted enough to fall into a deep sleep but that is all he wanted... SLEEP. 

By the time we got up for the day, he was burning up with a fever again and sounded hoarse from coughing so much all night.  When Doc came in, he said Manny was sounding gunky in the lower lobes.  (A sign of possible pneumonia.)  He ordered a chest xray. 

2pm, I asked for the copy of the xray report and sure enough, pneumonia.  He was immediately started on an IV antibiotic, they upped his meds to every 4 hours and added another breathing med. Right now the pneumonia is relatively mild and we are hoping it was caught early enough for it not to be a big deal.  But with kids like Manny (with weak respiratory systems), this is very dangerous.  And on top of an already weakend body and low blood counts still, well ... let's just say he can use all the prayers he can get. 

Headed to bed now ... he just fell asleep and I better sleep while I can.  We're going to be up a LOT.  He is coughing more than ever but he now cries that it hurts to cough.  Poor baby can't catch a break! 

Beyond Exhaustion

I've been contemplating.  "Tired" must be on a spectrum. 

On the beginning end is "Tired".  Then "Beat".  Next is "About to pass out."  Then comes "Exhausted".  Finally, "Beyond Exhausted". 

That last category of "Beyond Exhausted" is just a broad term to say, "More than exhausted". 

But I want to know ... what's on the other side of THAT? 

And that is where I am. 

For a long time I've been in chronic sleep debt.  Nightly, I wake up at least every two hours to reposition Manny.  Many nights, it's much, much more.  And I do it happily.

Then when he's sick, it goes into hyperdrive.  Throw in a couple of other sick kids and it's the recipe for disaster. 

Now everyone knows that nobody gets any sleep in a hospital.  So during this acute phase, my exhaustion numbers are off the chart. 

Manny is just not feeling well.  Last night, the cold type symptoms kicked in and he was having a hard time not choking/aspirating.  I suctioned all night.  I kept sitting him up for a better angle for him to cough it up.  (His bed is already at about a 45 degree angle.)  I'm going to do everything I can to keep this from turning to pneumonia. But of course his pulse ox machine kept alarming.  Not enough or long enough to put him on oxygen, but enough to wake us up OFTEN.  

The regular nursing things happened of course (medicines, blood pressure/temperature checks, etc) but he had extra stuff last night.  The TPN ended in the middle of the night.  Then he gets a 3-4 hour break and they had to rehook him up.  These are not quiet tasks.  They involve new tubing, etc. Then there was the blood draw.  They wanted him turned off for a while before disconnecting him to draw the blood.  Then the blood, then reconnect. 

Of course an hour later, the blood glucose test came back "wacko" at 37.  (For the record, it should be closer to 150 or higher since he is on TPN.)  So that meant he had to get blood sticks hourly for the next few hours until it regulated again. 

And of course there was the part of my brain trying to figure out why he suddenly stopped urinating. 

The other part of my brain was wondering if he was sleepy/tired and fell asleep so early yesterday and it was just a coincidence.  Or was it a result of the iron?  And is that even possible? 

By then it was 7am and time to wake up.  Change of shift.  Bedside nursing reports.  And he was ready to go for the day.  Me? Not so much.  Why it is that I don't like coffee???  (groan)

I can feel my brain... feels "fuzzy".  I feel like it's 3am and I have been pulling all nighters ... oh wait, I have!  But in my 20's I could handle it.  At 43, I just feel like a tank pulled over me, wasn't sure the job was done so it backed up and did it again. 

And just because I don't have enough to "fight" for, the nurses just added that I can no longer have Manny's labs.  (Apparently it's a newish policy and they were doing it for me anyway.) I can't even get my tired brain around that one.  But just means I'll talk to Cartaya and let him know nicely that I want "permission to give Mom the labs" to my chart.  (SOOOOO glad I know the ropes around here and this will only delay receiving the labs by a couple of hours ... but I hate red tape, especially tape that makes no sense.)  So as of right this minute, not sure what is going on with him but I should soon.  ::eye rolls::

And for the record, I asked why the change in policy?  Apparently, most parents that ask for it also ask for an explanation of the labs (which the nurses aren't authorized to give) and/or they ask "Are they going to DOOOO something about this?"  (Uh, duh).

Doc just left, Yes, of course we can have the labs and he'll write the orders in the chart.  :) 

As soon as we are fever free, we can go home!

Been studying the labs and, well ... they are concerning still.  Even after the transfusion.  Not sure what to think of them. 


Still has a fever.  Had the worst night ... couldn't stop coughing and now it's "coarse" down in his lungs.  They just did a chest xray ... waiting for the results.  Cool part is that they did one on Thursday so they have a recent one to compare it to. 

Today is the day we needed a dressing change on his broviac/central line.  As they were cleaning it, they noticed a small crack in the line.  As of right this second, it's not all the way through so that's good news but it could break at any time.  They taught me what to look for, what to do and how to handle it if it were to break.  It would be considered a medical emergency.  One more thing to worry about.  The only good news in this is ... this is repairable.  They talked about going ahead and doing the repair now but given how close the break is to his body, they felt the risk of repair would be more dangerous than not doing anything at this point. 

I'm very, very thankful this happened the way it did.  I do many of the dressing changes.  I'm not sure I would have noticed it.  And I was never trained on what to do if it were to break.  I had no supplies to stop it.  So this has prepared me for the emergency to come. 

Kaley has finally come down with the flu too.  Dan is going to come get her and take her home.  And if I keep saying, "I am not sick" over and over ... that should do the trick right?  That will take the place of the aches I feel and the horrible headache.  Right?  (Don't burst my bubble.) 

Saga to be continued.

May 20, 2012

Iron ... kinda necessary

Oh what a night.  Manny had his second dose of iron via tube.  According to the website about this drug, It should be spread out over 12 hours but he got his second dose only 6 hours later to try to catch him up. It should be given while food is in the stomach but alas he hasn't had food in there in 7 months so that's a slight problem.  And the person should not be lying down for at least 30 minutes after it's been given and it was the middle of the night so he was sleeping. 

All these things combined made for a rough, rough night.  He was throwing up (which is very hard with a nissen fundoplication).  He was foaming at the mouth and had a swollen bottom lip.  Then started the muscle cramps.  All night long he was crying about his legs and arms hurting.  And he kept saying, "Be careful with tummy" and was crying about it hurting. 

How often?  About every 5 minutes all night long I had to reposition him.  I was "sleeping" on the couch across the room.  And I was dragging my hiney out of bed very, very slowly.  I determined tonight that if he does this, I WILL be sleeping in his bed with him.  This hospital is anti-co-sleeping but a girl's gotta do what a girl's gotta do.  I already warned the night nurse. 

The same nurse was here this morning that saw his bad reaction yesterday. It was time for the dosage and she was like, "What do you want to do?"  I said that we could give it but if he had any troubles at all, I was going to open his tube up and let it drain back out.  Sure enough, he had the worst reaction yet.  So I opened up the tube and let it out. 

I devised my plan to talk to Doc about the problem and convince him that this was NOT working. He asked how the iron went but before I could even tell him the whole thing, he said he will be switching him to IV iron.  (sigh ... gotta love a doc that listens!) 

Now we'll be giving him 3 days of IV iron while in the hospital.  That's the easy part. 

The hard part is ... some home health agencies will add the iron to the TPN, some will not.  I have been told that ours will not.  But our home health nurse called me tonight to see what is going on and I told her this.  She is going to call the pharmacist tomorrow directly and see what the policy is.  And if it's a "No" answer, then she will find out what they WILL do or why they won't do it.  We are willing to take the question up to corporate if we have to because if some agencies will do it, then why won't they?  And are they willing to lose a client over it?  And are there other local agencies that will do it?  So ... there is some homework to be done tomorrow for sure. 

But we have to get this sorted out because his iron levels are soooo low that we have no other choice.  Even after his blood transfusion and 3 doses of iron, he is still anemic.  We have to build his reserves.  For those who understand iron studies,

Tonight we started the He had his IV iron given and the went right to sleep.  Not sure if it's a sign of the iron or if he was just tired/sick and ready to go to bed.  We will be able to sort that out tomorrow as his next dosage won't be so late in the day. 

He has Influenza B.  The way it hit my other kids is ... couple days of just fever, headache/dizzy.  Then about day 2-3 add the "cold" type symptoms (stuffy head, runny nose, cough, etc.)  This is the most dangerous part for Manny because it's hard for him to cough things up enough so things tend to settle down into his lungs as pneumonia.  He's already starting to desat and is borderline needing oxygen.  We're already set up for the night in case he does. 

10:30 pm, nurse just left and his temp is 103.7 axillary.  And he was given tylenol about an hour ago ... so it's not working.  And his heart rate is near 200 while sleeping (normally 90 when he sleeps).

Praying for a good night sleep for both of us. 

The Meeting

Last week, we had an amazing opportunity. (I haven't mentioned it yet for several reasons... one is we ended up straight in the hospital so I've been focused on this.  But the other reason is that I want to give some privacy. And finally, I can't imagine so it's hard to comprehend.) 

But ... we met Manny's birthparents. 

(I'll give you a second to absorb that thought.)

I'll Call them R and V.  R is this tiny young lady who is sweet and gentle.  It was clear that she loves Manny a lot.  I knew when we got him at 9 months that he had been loved a lot.  She kept in touch with the adoption agency and asked for a meeting. (I can't imagine seeing your child after TWO years, knowing he has a "terminal" condition and is not doing well.) 

One of the gifts was a dog that had the name tag "Scout" on it.  I had told them that he could read and no one believed me.  So he points to the letters and says, "S.C.O.U.T."  And they were all impressed. 

To our surprise, V (birthfather) was at the meeting as well.  Now I know where Manny gets his looks.  I could see very little of Manny in R.  But he is a "Mini V".  And this man, so gentle.  Perfect smile, perfect teeth, sparkle in his eyes. 

They say they speak no English so we had to communicate through a translator.  But I also noticed that V could understand most (if not all) of what we said. 

R brought him TONS of things.  Toys, shirt, shorts, hat, socks, diaper bag.  The things kept coming. This bear Scout is his favorite so far.

I gave her a gift of a necklace.  It's a symbolic thing.  I have a similar one that I wore to the meeting.  She seemed appreciative but overwhelmed by the whole meeting. 

A funny moment happened when we first got there.  She wanted to hold his hands but he wanted to play. He was sitting in the wheelchair playing with cars.  She was trying to hold both of his hands and he kept saying, "Let Go!"  They couldn't understand him so she kept doing it.  I couldn't help but giggle a bit. 

I know she just wanted to be with him, near him, hold him, know he was OK.  She says she knows she made the right decision.  But she gets a lot of grief from family members about her choice.  We tried to reassure her that the decision gave him a shot at life.  I hope it's enough to give her some kind of peace. 

She said she had been having a lot of bad dreams.  Mostly dreams of his demise.  I assured her that if/when something happens to him, we will let her know.  With that news, she breathed a sigh of relief. 

V?  He just sat and watched Manny.  Smiling endearingly.  He was enthralled and content to just watch him, to absorb him.  He truly enjoyed Manny. 

We got lots of pictures and several videos.  I cannot really post them due to their privacy.  And without the pictures, the story is incomplete. But I respect their privacy. 

I hope that somehow, it gave her some kind of closure.  I know she can tell he's doing well.  That he's loved.  That his medical issues are waaay beyond what she could do.  But ... even still, I cannot imagine how hard it is to be a birthmother.  I can't begin to know what it is like to have your child, that you love and adore, but can't be with. 

I KNOW beyond the shadow of a doubt that R's decision to place Manny for adoption SAVED HIS LIFE.  And she was brave to make that decision for HIM.  Because the best thing for HER would have been to keep him. 

Before we knew it, the 2 hours were up and we were saying goodbye.  They said they were grateful from the bottom of their hearts. 

The whole thing was surreal and a blur.  I know it was the right thing to do to meet them.  We have chosen to still not share personal info with each other, but instead communicate through the adoption agency.  (The director has become a friend in the process.) 

And Manny?  How did he do?  I didn't tell him who these people were.  I said they were friends.  But he still acted a bit "strange" around them.  He was a little "off" as he met them.  He warmed up and showed his real personality by about half way into the meeting.  After, I told him their names as I showed him pictures from the meeting. 

I don't think he understood... but you never know how much sinks into that brain of his. 

At this point we have no plans for a future meeting.  I will send them periodic updates and pictures. And we'll figure out the rest of the journey as we go.   

I'm thankful for the opportunity that many adoptive families NEVER get.  But mostly thankful for their selfless gift of Manny.  So many lives have been changed by this little guy. He is a gift to the world. 

Thanks R and V!  

May 19, 2012

Blood is a good thing

At 1am, it was finally time for the blood.  If you've never been around for the transfusion process, it's "intense".  There are so many forms (all having to be witnessed by two witnesses).  Every step along the way has to have 2 witnesses.  Our nurse missed one small second signature on one of the labs and the whole process had to be started over.  She was overly apologetic but it was truly not a big deal. 

Since the blood could be taken from his central line, there was no pain or problem for Manny.  And since he was going to receive more blood, I wasn't worried about them taking too much.  So just a small delay in timing to make sure it's all done right?  I was fine with that.  Besides, this floor I'm on basically never gives blood transfusions.  It's either done in the ICU (down the hall) or on floor 1 (the hematology/oncology floor where tons are done).  So these nurses rarely do it.

So the two nurses come in for the administration.  They have several redundancy safety measures built in.  And then both stay for the first 10-15 minutes (as that is when the risk of reaction is the greatest).  Then the primary nurse stays for about 30-45. 

But somehow, after the first 10 minutes, we repositioned him and saw that the blood was all over him and not going in him.  There was something wrong with the tubing and the way it connected.  Pretty easy fix. 

But there was a lot of blood all over him, his bed, etc. It looked like a crime scene! I was joking saying I should take pictures and punk all you readers but their reaction was soooo horrified that I realized most people probably don't take this so lightly as I do.  But I'm relieved!  He was finally going to get some blood, some much needed blood.  I saw this coming for weeks. So I was happy that he was finally getting the help he needed. 

About 10 minutes after the blood was actually going into him, he had a definite reaction.  He WOKE UP!  I mean it was hilarious.  He went from this grumpy baby who was screaming and objecting to everything back to "Manny".  He was flirting with the nurse, asking to get up in his wheelchair, asking to play ipad, asking for TV on.  He even said he wanted to go to Chuck E. Cheese.  The nurse asked if she could go too and he yelled, "NO!"  In a very playful voice and then laughed. 

The problem was ... it's almost 2am and he's wide awake and ready to play.  Me?  Ready to crash.  Thankfully, I'm good at being boring at 2 am so he eventually faded back to sleep.

The rest of the night (the next four hours) were uneventful. 

And now this morning I'm just thrilled to have my baby back.  He's himself.  He's still sick as a dog ... has a high fever, feels miserable, is trying not to let it settle into his lungs, is still weak (all flu related) but for whatever reason, he needed blood.  And now he has it. 

Now we work on the two things.  1) Get him over the flu without letting him get new complications.  2) Uncover the cause of the dropping hemoglobin.  Hopefully some of the blood tests will be back and point us in the right direction. 

10am, got the results of the Liver Ultrasound ... completely normal!  I am beyond relieved about this.  Why?  He was on TPN for 3 months when his gallbladder "died" and typically liver is next on the list.  He is showing some signs that could be liver failure ... so this is huge!  Great news.  Phew! One thing off the list.  (For now). 

11:30 Doc came by.  I told him I was only 2 hours into researching iron studies so I wasn't exactly an expert yet.  I was having a hard time differentiating between iron deficiency and anemia of chronic disease based on his labs.  Doc said that is because he has both.  It's a good thing that I know my kid and trust my gut.  For 6 weeks now I have been concerned.  Something is wrong and I knew it.  Sadly, I was right. 

Am anxious to see the Hematologist for the next steps.  She should be able to explain where we stand, how bad off he is, treatment options, etc.  It's so complicated because what helps low iron will actually exacerbate the other type of anemia.  So have to find the fine balance. 

1pm Dan and the kids showed up to bring me a few things from home and relieve me for 30 minutes or so to run to the grocery store to get us some food.  It's so difficult to get to the cafeteria and leave Manny when he is so sick. 

Just after they arrived, the hematologist arrived.  She said we will take this in steps.  He definitely has low iron.  They will try to solve it with the least complicated method first and then go from there.  For most people, that would be to take iron.  Well, he can't do that.  So next would be to put it in the Gtube.  Those who have followed along  know that his gtube is basically unusable.  He hasn't had anything put in it since February 2011.  (Well over a year).  But the doc wants to try it anyway as this is his best chance of absorption. 

But as I type this, he is retching.  They say if we can keep it down for 30 minutes that would be good.  We'll see.  Also, his bottom lip is swollen.  (Strange!)  The nurse I have today isn't one of our "regulars" so she doesn't know us well enough to know that if I am concerned about something, then it's concerning.  But I looked up the side effects and swollen lips is on the "severe reaction" category.  Seems like we are allergic to the iron.  :(

Not to worry, if this doesn't work, we still have IV iron that can be done.  (It would be given at the Hematologist office which is inside the hospital for close monitoring.)  It's just a lot more difficult. 

And it's only with time that we could differentiate from "simple" anemia vs. anemia of chronic diseases (an inflammatory process).  She said that is only confirmed with process of elimination.  I am THRILLED to have someone monitoring his results besides me.  They have asked me to fax the results to them weekly. Yay. 

In the meantime, she felt that there is no hematological reason to stay in the hospital.  So once he is fever free for 24 hours, we can go home.  That means the flu just has to run it's course.  And with the blood on board, he has a fighting chance! 

He's doing better.  Still sick.  Still high fever.  Runny nose, cough, etc.  But he asked to sit in his wheelchair and play ipad.  It's the first time he's been out of the bed since we got here.   Happy to see it!

7 pm, Manny started retching even harder.  He wouldn't stop.  I vented his G tube and out came all the iron (that had been put in at 3pm) along with a whole bunch of other "gunk".  He was screaming as it came out.  Then he started yelling, "Owie Face!"  I've never heard him mention his face before.  Eyes or ears or nose or neck yes but never Face.  So very very strange.  His lips were still swollen and the skin below his eyebrows was bright bright red.  The nurse saw this and called the doctor immediately.  The reaction subsided as soon as it all came out his gtube. 

Then he crashed in exhaustion.  But he's been awake most of the day, so that is a huge improvement.

May 18, 2012

Full day

8:30am, Dan calls and says that Luke is the next soldier to fall to the illness that is going around.  So if anyone is keeping track, Dan, the girls and I haven't gotten this.  I find it interesting, it's all 4 boys that have gotten it so far. 
Us?  The night was long.  Every time someone would come in the room, he would SCREAM until they would leave.  He was very, very scared waiting for the next bad thing to happen to him.  But truthfully, this has been one of the easiest admissions so far. 

He has the central line to draw the labs off but usually with a fever, they want a blood culture from the line and one from a peripheral site.  Doc and I agreed that this is likely a flu so the cultures are just a formality.  IF the one from the line comes back positive, THEN we will do the extra needle stick.  But odds are it's nothing so why needlessly prick him?  (He is having a hard time healing and clotting right now and even more a difficult stick than normal.  And the blood sticks they did more than a week ago are still not healed. Not a good sign.)

The specialists have start to wander by.  First was the Neurologist who was the one assigned to us two years ago.  He is the one who gave us the news of his HORRIBLE brain scan and that he would likely not make it to his first birthday.  (I don't feel he made a mistake.  It was the wrong diagnosis but he was going by the other cases that he had seen of similar looking MRIs and thought that is what he was looking at.)  Anyway, he referred us on to a different neurologist once Manny's diagnosis was "beyond" him.  We haven't seen him in like 1 1/2 years.  So imagine his shock to see how GREAT Manny is doing ... sitting, talking, etc.  (All things his MRI would indicate he could never do.)  Why him today? Because this neurologist is covering for our regular one for the weekend.  It was cool to see him again, but I know way more about Manny's condition than he does so he was at a loss of how to help or what he could do.  (Which was to be expected by the way.) 

Next came in the lady to the the Echo for Manny's heart.  Doc heard what he felt was a difference in Manny's murmur.  He wanted specifically to see the Ejection Fraction (i.e. the function of the heart).  And the tech isn't supposed to interpret the results, but she is a friend.  She said it looked normal to her.  (phew).  That is good news meaning that his heart is still functioning like it should.  (With his underlying muscular dystrophy, about 1/3 of the kids develop a significant cardiac condition.) 

As I was typing this, I got the labs from the middle of the night ... uh ... he'll be getting a transfusion SOON I am sure.  Oh my, oh my I am glad we're in the hospital for this! 

Doc came by and stayed for a while.  We discussed the short term and the big picture.  (He is the ONLY one who will do this with me!)  We are on the same page, as usual. 

Short term ... this is likely the flu and we just have to support him through this with respiratory, fever, dehydration, etc.  He's being closely monitored so we're good.  I feel thankful to be here and not doing this all alone.  We're surrounded by people who love him, who know him and have his best interest at heart. 

Long term ... he feels this is a manifestation of the progression of his illness.  It's possible that his hemoglobin and red blood cell decline are "anemia of chronic disease".  He says he'll defer to the hematologist for that diagnosis for sure but that's his guess.  (That is not good news.)  And we're on the same page about the TPN too ... it's the only option we have right now, but it's a very life-shortening decision for him.  :(  
Look how tiny he looks in that bed.

He says we will be getting a transfusion today no matter what.  (Even if hematology doesn't agree with the decision.)  There are apparently new guidelines for adults of when to transfuse but the pediatric guidelines have not been established yet.  So it's gray area. 

Meanwhile, it's noon and Manny is already back asleep.  He hasn't asked to get out of the bed today.  He hasn't asked to play.  He hasn't played with his ipad.  For those who know him, they know this is NOT him. 

2pm he had to go down for an abdominal ultrasound (looking at the liver mostly to see if that is the culprit of our big picture problem).  He SCREAMED and begged to stay in bed, not get in the wheelchair.  He cried the entire way down and the whole time in ultrasound and the whole way back up.  Soooo not like him.  I did a temp right before we left and it was the highest his has been. 

Finally got back to the room (a long 25 minutes or so) and he went right back to sleep.  It's 4pm now and he's still out.  He is very, very pale looking.  Breathing is shallow.  He does NOT feel good.

I am sooooo relieved to be here and not at home with him this sick.  There are times I would rather be home as I feel I can better take care of him than they can.  But this time, I need help.  I need the extra eyes, the machines I don't have, ICU just a few feet away, etc. 

Still waiting for Hematology doctor to come give us the low-down on what they think is going on, what tests they want to run and their proposed treatment plan.  I know that either way, Doc is giving us some blood. 

And again, my brain goes to all those people who willingly give their blood for people just like us.  I used to be able to give  (prior to a health challenge of my own) and I thought NOTHING of it.  Just stop by, donate, no biggie.  Truly, truly never saw it as a big deal. 

I also think back to an Uncle I never met.  He died when he was early 20's and my dad was 16.  Uncle Billy had become a Jehovah's Witness (his wife was) and he got ill, needed a blood transfusion.  He would have lived had he gotten it but his religious convictions prevented him from getting it.  I do not judge him for the decision to stick with his faith.  But I do wonder what he was like.

And it makes me all the more aware that blood can be the difference between life and death. 

4:15 the hematologist came in.  Upon coming in, she was not convinced that he would need the transfusion. Upon seeing him, she knew immediately.  He is pale, not waking up, etc.  It was a no-brainer she said.  She will be doing a blood work up as well.  She mentioned iron tests, blood smear test, an electrophoresis, bone marrow ... but will look at the big picture first to see what all she will order and when.  I like that they are systematic and not reactionary.

4:30 Nurse popped in and said, "You are such a smart Mama!"  She said the labs just came back positive with Influenza B.  I knew it was the "flu" I just didn't know the exact strain. 

5pm talked to Dan and Luke. He's miserable and I can't be there to Mother him!  I feel so torn and helpless.  The "sick" room is all set up with vaporizer, fan, medicines, TV, etc.  I hadn't dismantled it since Sam used it.  And Sam will make a good "Nurse" ... he knows all I did for him and can do some of it for Luke. 

And by talking to Dan, Manny perked up for the first time.  He was actually happy, talking, interacting.  After Dan hung up, Manny asked to sit up and play ipad in his bed.  Yay. 

6pm, I hear the nurses getting all the orders read and prepared that the Hematologist ordered.  This takes a LONG time to do because of all the special protocols for blood transfusions.  Given that we are almost at change of shift, I bet this will be done later this evening.  (Which is fine.) 

6:30 blood was drawn ... lots of blood tests.  All ordered by the Hematologist.  If he weren't about to get more blood, I'd be greatly concerned about the volume they're taking out! But they're about to replace it with someone's much healthier blood so all is good.  I'm very intererested to see the results since they are all tests that have never been ordered before. 

6:45 he is back asleep.  He BEGGED to go to sleep.  At least he was awake for almost 2 hours! 

This blog is already long enough so I'll sign off now and start working on the next one. 

Thanks for all the prayers, notes, emails, calls and support.  We feel you holding us up in prayer!

May 17, 2012

Happy 2 year anniversary

Life is never dull.

Last week, Sam (our 10 year old) got a fever, no other real symptoms.  Lasted 5 days.  About 3 days in, Jacob (13) ditto.  Kept doing our darndest not to let the rest of them get it, but especially Manny. 

Why?  Because when he gets a tiny thing, he gets BIG sick.  And his labs are showing that his white blood cells and his red blood cells are way low, which leaves him vulnerable. 

Meanwhile, several people are looking at the labs and are concerned but it is not clear as to who is "in charge" of the case.  Why is this concerning?  His levels are below the level that would need a blood transfusion.  Now this is a matter of judgment as some people can handle lower hemoglobin levels than others.  But the problem is when the person becomes symptomatic. 

So here's a quick education on hemoglobin basically.  It is what carries the oxygen through the blood.  So the lower your hemoglobin, the lower the oxygen in your cells.  A child his age should be around 14. Most doctors like to keep it above 10.  Transfusions run their own risks.  About 10-20 years ago, the rule of thumb "transfusion trigger" was 10 for the hemoglobin.  And 30 for the hematocrit.  (His hematocrit is 23.8). Now the thought is below 8 for sure.  In the 8's if the person is symptomatic.  

What symptoms?  Well, any kind of breathing issue.  (High respiratory rate, low oxygen saturation, etc.)  

Manny's oxygen saturation is normally about 98-100.  Even a couple of nights ago, this was what he was running.  Last night, he was hitting the low 80's.  So yes, his breathing is being affected.  

Thankfully, this morning I had an appointment with his Pulmonologist.  He was concerned.  Concerned enough that he stepped out of the room and called his friend, the Hematologist.  They set an appointment for Monday.  All this was done before he came back into the room.  

I then got Manny into the car and when I did, he felt hot.  Very hot.  And I knew what this meant... a trip to the ER at a minimum (for blood cultures ... remember, the rule is: if you have a central line and a fever over 100.4, you have to get a blood culture... and then it's up to the physician if they admit and treat or not).  But I also knew that given his strange labs, they'd admit him.  

They did.  I called the pediatrician.  She called the hospitalist.  3 minutes later I got a call from the pediatrician that Manny would have a bed ready when we got there.  

I packed the last minute items.  (See, I keep a bag packed but the last minute things have to be added later like the phone charger, laptop, etc.) 

I explained to the other kids what was happening.  (that's always a hard conversation).  We prayed as a family.  

Kaley, Manny and I headed to the hospital.  The whole way (abotu 45 minutes), he was passing out and retching alternating.  He said, "I not OK."  and "I sick".  

Got to the floor and he perked up a bit to see all his peeps.  They always have the same reaction, "Hey!!  Nice to see y... Oh, no!"   They love seeing us but hate that it's because he's sick again. 

Doc came in and I said, "Happy Anniversary!"  He was like, "Of what?"  It was exactly 2 years ago that I was admitted to the hospital for the first time.  He wasn't sure if Manny would survive the night. So to see him TWO YEARS later, it's a blessing.  The three of us have been through a LOT together! 

So I tell him the symptoms ... High fever, lethargic, combined with erratic breathing, high heart rate and bad labs. (Specifically his WBC is 5.1, RBC 3.0, HGB 8.0, HCT 23.8 and all are dropping.)

Doc is going to call in a whole slew of specialists for him. 
Hematology for all his wacko labs.
GI for his TPN needs, etc
Cardiology for his 
"innocent murmur" that is "different" this time I'm told,
Ultrasound for his liver that is tender.
Neurology/MD Doc for a consult about a possible progression of his Muscular Dystrophy symptoms
He also ordered tons of bloodwork, a chest xray, a viral panel, a strep test, etc. etc.  

What does this all say to me?  Doc is concerned too.  

We got here about 5pm and he was begging to sleep.  He slept off and on until about 7:30 when he started screaming! He was burning up again too.  Tylenol.  Nothing would comfort him.  Finally, it kicked in.  Then he is now wide awake as I'm ready to crash... but I know there are more treatments and tests to be done still tonight.  More invasive tests, more blood to be drawn, meds to give, etc. etc.  So I hunker down for a looooong night. 

We've only just begun. 

Yes, Kaley is with us.  (She is a gift!  She was soooo excited to come back ... uh, she must have a boring life if this is fun! LOL) 

And me?  Somewhere between the lab test, the pulmonologist visit and driving to the hospital, I lost a filling in one of my teeth.  Thankfully it's one in back so only I will notice.  But it hurts.  And it's sharp and keeps cutting my tongue if I talk.  (Guess who won't be talking much the next few days?) 

Like I said, it's never dull around here. 

May 13, 2012

It's Complicated

I find Mother's Day to be a very complicated swirl of emotion kind of day.

Yearly, I find myself at the card aisle hoping to find a card that will say what I want. And always end up picking a card that says PART but certainly can't capture it all.  I mean, how can a cutsey verse or two of prose actually sum up one of the most important relationships that you will be entwined with forever? 

And it also reminds me of something my mother said.  The time had come for her mother to leave her earthly body and she was entrusted with picking out the casket.  Mom relayed to me that she walked around the place in a blur, eventually settling on a box.  But she said very clearly, "There is no box worthy of my mother." 

She went on to tell me that losing her mother was like this:  Ever since you were little, there was this huge oak tree in the backyard. You play under it, climb it, rely on it, enjoy it... then one day, it's just been uprooted and all that is left is this huge hole. 

That's been almost 10 years. 

At the time, I just listened.  Afterall, I have not lost a mother so I don't know.  I also only had two small children at the time and I was so in the thick of being a new mother that the whole concept of "Mother" was a bit daunting. (Who am I kidding ... it still is!)

So to all those missing your mother this year, I am sorry for the hole in your backyard, the hole that will always be there.  I am thinking of you. 

I used to look at mother's day and cry.  Afterall, I'd wanted to be a mother and it eluded us for many years.  Miscarriages.  Failed adoptions. Foster children that came and went.  It was complicated. 

Then I became a mother.  Again and again and again.

Now I think about my mother.  I think about my husband's mother.  These two ladies (friends by the way) are different in strengths and personalities but both share that same mother's heart.  The kind that would lift a semi off one of their kids and grandkids.  Both to be greatly admired. 

I also think about 4 birthmothers and a foster mother every mother's day. 

Mayola ... She birthed Jacob at home and then took him to the hospital to be adopted.  He was struggling to live so she isn't even sure he is still alive.  16 months later, she birthed Kaley and called the paramedics to take her.  She has no clue these two have found each other and are living together.  And I wonder ... does she ever think about them?  Does she know she made a great decision to place them for adoption? 

Cathy ... She birthed Sam and could only keep him for 10 days.  Choices she made prevented her from keeping him. And then 20 months later, she delivered Luke.  She was in jail at the time.  She got to hold him for a few hours and then he was gone.  She knows they are together.  She knows they are with us.  She hasn't seen Sam since he was 10 days old.  Hasn't seen Luke since he was 1.  I wonder what goes on in her mind every Mother's day.

Unknown ... Zoe's mother is somewhere in China.  We don't know her name.  We don't know the circumstances of why Zoe was found the way she was found (in a non-traditional way for Chinese abandonments).  We just know she was meant to be found.  Zoe recently asked about this birthmother and said she is dead.  I think it's her way of coping with the question of, "Why would someone abandon me?  She must be dead."  But I can't help but think of this mother.  She thinks her daughter is dead.  Ironically, she is named "Zoe" which means LIFE. 

Yima ... this is Zoe's foster mother.  At 11 months, this lady took Zoe in.  She loved for her and cared for her like her own.  I've had the chance to meet this woman twice now.  She is amazing.  She still calls herself Zoe's Mama.  I'm OK with that.  We all need all the Mama's we can get in this life. 

Rosa ... this is Manny's birthmother.  She is very, very young.  She kept him for 8 months before placing him for adoption due to health concerns.  She misses him a lot.  How do I know this?  She has contacted the adoption agency and asked if she could meet us and see him.  We have the meeting set up for Tuesday of this week.  I know many of you will be happy for the decision, but most of you will question if this is the right thing.  I'll have to write another blog on how we came to this very difficult decision, but we feel it is the best thing for everyone involved.  So I think of her mostly this year. 

I also reflect on the ladies who desperately want to be a mother but circumstances of life have not worked out that way.  Your arms are "empty" and there are no misspelled cards, sloppy kisses or pitter patter of little feet for you again this year.  There are no words that will comfort you.  I know, nothing comforted me. 

I reflect on those who have lost children.  Even if you still have other children, the loss of a child is so unspeakable that there are just no words.  Time doesn't heal the wound.  And so my prayers are with you. 

I also think about those people who, for whatever reason, are separated from their children.  Time, distance, idealogies, etc.  You want to hold them but you can't.  And as a mother, you feel incomplete because you can't BE THERE for them the way you want to. 

So Mother's day to some is about bad breakfast in bed.  Or cards.  Or flowers.  Or dinner out.  A special day to be recognized.  But to me, it's a very complicated day.   I love the cards and the flowers and not having to cook and being recognized.  I love that I am a mother.  I love that 365 days this is the hardest, most thankless, most impossible job in the world.  And some days I'm even up for the task and feel I do a good job.  But most days, I just struggle from the time they get up until I go to bed. 

Wondering.  Worrying. 

Is it enough?  Am I being a good mother?  Am I raising Godly children? 

And I never know.  Some days, I think it's working.  Other days I feel like I got hit by a tank. 

Another diaper. More dinner.  Dishes. Laundry to fold. Hair to cut.  Boo-boos to kiss. Hearts to mend. Lessons to teach. Praise to give. Displine to administer.  Toys to pick up. Medical decisions to make. 

And one day blurs into the next.  Always wondering if it's enough.  Praying for God to make up the difference (which on some days is 99% or more). 

One day, the rug is pulled out from under your feet and you look around to see if all your proverbial eggs in the nest are still OK.  Sometimes they're not.  And you just pick up and go on best you can. 

And in the middle of the heart wrenching chaos that is our lives some days, you hear a little voice say, "Mama" ... and you put on your proverbial cape and become MAMA again.  That little voice keeps you from spinning out of control on all the thoughts in your head, all the worries, all the doubts.  Because AT THIS MOMENT ... Someone needs me to be Mama. 

So carry on Mamas of the world.  You're doing a great job.  And no, it's not enough, but God WILL make up the difference.  Trust Him. 

He entrusted you with His most precious gifts in the world ... He has faith and confidence in you.  So carry on. 

And if you, like me, have mixed feelings about this day, it's OK... because it's complicated.  And that's OK too.

May 8, 2012

Sherlock Holmes

OK so I will try to break down what is going on with Manny currently.  Bottom line: We don't know.  But we have some "hints".  Eventually, this will become clear, but for now, I can only play Sherlock Holmes and follow the clues. 

Several things are going on simultaneously and they're probably all related. 

Looks like his bowels are starting to shut down. Bile is backing up into his stomach causing him to retch.

His labs are very concerning.  Last Monday the labs drawn were bad enough that when the docs saw them, they had a STAT re-draw.  Yesterday, the labs were drawn again.  I got the results today and they are worse. 

How bad?  I will try to describe.  In all of the hospitalizations, Manny's labs are always good to start with.  (For the really bad central line infection; for the gallbladder that ruptured, etc.)  They start good and then they start to decline.  Then they get to a certain low level and we start talking transfusion. 

THAT is where we are.  But this time ... we're not in the hospital.  We aren't on top of what is going on.  In fact, no one can even agree with what is going on.  After discussing today's labs with a couple of doctors, they are all on different pages. One wants to do watchful waiting, one wants to get a liver ultrasound asap, one wants to get us to Boston asap, one says I should get to the ER tonight. Clearly, this is not straight forward. Praying for wisdom (and healing, as always).

So what IS going on? 

These are a couple of the top contenders:

1. bone marrow dysfunction with low grade infection
2. intestinal failure or blockage
3. liver failure
So I'm continuing to be Sherlock Holmes and put things together. Trying to figure out this mystery.  Where is Dr. House when you need him?? LOL
What do we do in the meantime?  I'm watching him like a hawk.  (He's already in pain and crying a lot, and generally more grumpy than his usual self.)  My doctor will be faxing all our stuff to Boston tomorrow.  I will be getting an ultrasound of the liver ASAP (scheduled in the morning for the quickest they can get us in). And pray.  God has been faithful to keep us going one step at a time.  This is just another step.  And I will be faithful to walk this one out too. 

May 6, 2012

Hello Again

I know.  I know.  You've been wondering what the heck is going on with our lives.  Well, like I've said before, if I'm quiet for a while, we're busy living life. 

We've had some 'issues' with things (not related to Manny) that have distracted me from the blog.  (Understatement.) 

Now trying to summarize ...

Manny has been out of the hospital (except for the two days where we had a false positive) since February 27.  Can you believe it?   And as of tomorrow, May 7th, he will have had his broviac (central line) for 3 months without a line infection.  That is HUGE too. 

Now on to the not so good news.  His labs are causing concern as is his abdominal pain over the liver area.  It appears he's headed into liver distress/failure.  Last week I was very concerned about his labs.  But this week was worse. 

Every Monday he has his blood drawn.  Every Friday I get a copy of those.  This Friday, they arrived about 3:30 pm and I immediately went into grave concern.  I'd had them about 5 minutes (while I talked and prayed with Dan about them) when the home health nurse agency called and said the doctor was also very concerned and wanted a STAT CBC. 

What is going on?  His white blood cells tanked.  His red blood cells, hemoglobin and hematocrit are at dangerously low levels (some doctors would transfuse at these levels).  They didn't want to wait until Monday's labs to see.  If the new labs were the same or worse, they would hospitalize him. 

So Friday night, the nurse came by to do the blood draw (during a church meeting where we had about 15 people in our home nonetheless).  Saturday morning, the labs were back.  Each value was SLIGHTLY better.  Enough to let us stay out of the hospital.  (Phew!)

Meanwhile, he has some other concerning labs too.  All related to the liver.  Liver enzymes have greatly increased in the past 2 weeks.  Liver function is also being affected.  Why?  TPN is very toxic on the liver.  There have been adults that have been on TPN for a lifetime, but kid's livers aren't fully developed yet and they are more susceptible to the toxic effects. 

Even so, some kids can be on it for years with no real effects.  Manny was on it only 3 months before his gallbladder died.  Now the bullseye is on the liver. 

He also has periodic pain in the area of the liver. 

All not good signs. 

What can be done about it?  If he could get off TPN, this would all be over.  Effects tend to reverse themselves when the TPN stops.  But in his case, we haven't found a suitable alternative yet. 

Some kids have liver transplants.  Or even entire bowel/intenstine transplants.  Manny is not a candidate for this we are told. 

You can live without the gallbladder.  You cannot live without the liver. 

Other options?  Boston Children's hospital has a motility clinic that MIGHT be able to help restore his ability to eat.  (We're told if ANYONE can, it's them.)  Secondly, they might be able to help with an alternative to one of the components of the TPN.  Lipids are what "eat" the liver.  They are one of the few hospitals in the country that can prescribe this lipid alternative.  That might be an option for us. 

Therefore, last week I contacted them.  They told me what they needed to be registered.  I got right on that.  We certainly need a bit of favor as they are booking appointment 3-6 months from now... BUT ... they can expedite if necessary.  At this rate (if you're doing the math like I am), we don't have 6 months to wait.  He's teetering NOW. 

Any other concerns?  Yes.  The past two days he's had a low grade fever again.  (We have to get a blood culture at 100.4 and he's been between 100.1-3.)  He's also just "off" again.  And finally, he's starting to dig at his broviac site and saying "Owie" during these past 2 days too.  It actually got bad enough that he pulled the bandages off today at the park.  (Oh my he has wandering hands and he is persistent when something is not right.)  So I had to do a quick dressing change.  I was expecting to see some type of issue with the skin ... but there was NOTHING wrong with the skin.  Ugh.  So if he's pulling at the line and complaining about "owie", then it makes me wonder if there's something wrong INSIDE the line.  (Often a sign of an issue.) 

So where does this leave us?  Where we have always been ... needing MAJOR Divine intervention immediately.