Dec 29, 2011


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.

Dec 27, 2011

The discharge hiccup

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? 

Dec 25, 2011

A Perfect Day

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.   

Dec 24, 2011

You're Listening?

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. 

Dec 22, 2011

Manny's Fun Day

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? 

Dec 21, 2011

Got an answer to prayer

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. 

Dec 20, 2011

No PICC, need a plan

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. 

Dec 17, 2011

Now What?

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. 

Dec 16, 2011

Reflections and Photos

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!


"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

Dec 15, 2011


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!

Dec 14, 2011

More tests

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. 

Dec 12, 2011

Here we go AGAIN!

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 ... 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 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

Dec 11, 2011

Bye Bye ICU

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. 

Dec 10, 2011

Great news finally

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. 

Dec 9, 2011

Ipad and changing nurses

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.  (  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. 

Dec 8, 2011

History and Happy Pics

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'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 ...   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! 

Dec 7, 2011

Chest tube in

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.

Dec 6, 2011

Day 2 ICU

  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

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.