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Wednesday, March 30, 2011

PICU- not sure what day it is anymore

It occurred to me this morning that today is day 12 not yesterday, since tomorrow it day 13 and its looks like WE ARE GOING HOME!!  At least that is the plan for now (you know how things change at the hospital).

This morning they moved Joey from the PICU to the PCU- which is a step down from the PICU but a step above regular peds.  The plus of the new room: its OWN bathroom!! (before I had to go to the lobby to pee).

The minuses: the 'bed' is a recliner chair that lays out into a flat surface.  The bed in the other room was 'ok' and I could get some sleep on it. This thing not so comfy, just sitting on makes my butt sore.  Not sure if i'll get getting any sleep tonight.

Now onto the not so good part of the day.  Joey had his swallow study today at 1:30.  The dr kept us waiting for almost an hour but we got it done, but not with the results we were hoping for.  Within the first drink, the doctor saw the problem that probably landed us here in the hospital in the:  While Joey can suck really well, he has a really poor, uncoordinated swallow.  When he drinks, the fluid collects in the back of his throat and instead of swallowing when he is suppose to, he swallows when he wants to, which is confusing to this throat and epiglottis because instead of closing to close off his airway when he swallows it is open some causing the fluid to go into his lungs:(  This COULD be from being intubated for a week, but since he has the same symptoms now as he did before he ended up in the hospital, its possible this is why he went into respiratory failure.  This isn't solely because he has EB.  The dr said this happens in 100% healthy kids too. Not to say EB isn't a part of the problem, but leave it to my kid to have a rare genetic disorder with the possibility of tons of complications and have yet another medical problem!  So what we thought was an EB related hospitalization may not be after all.

So for now we are no longer able to bottle feed him:(  So its a good thing he has a g-tube otherwise he'd be getting one tomorrow!  He also will need feeding therapy and we will repeat the swallow study in 4-6 weeks after therapy starts.  Who knows when that will be as this hospital doesn't have a feeding clinic and the other two locations that do are on the other side of town.  We are hoping we can get therapy from Florida Early Steps Program but it'll probably take a few weeks to get things scheduled.  So for now he is g-tube feed only.  Of course he doesn't like it since he really likes to eat and whenever he wakes up he expects a bottle to go into his mouth right away! But hopefully after a few days he'll adjust.  He will get 5 bolus feeds throughout the day and then continuous feeds overnight.  Maybe that will help him sleep through the night at an earlier age:)

He does still need oxygen; he is on .25L which is something he can go home on.  So case management is working on getting us O2 for home and for g-tube supplies.  Hopefully this can be all taken care of by tomorrow so we can go home!

His skin is so-so right now.  Things are healing but some areas still breakdown daily.  

I think that is all that happened today.  Here are some pictures of our cute baby boy:)


  1. LOVE the pictures. He is gorgeous! So glad it looks like you guys are going home soon. Praying things only look up from here.

  2. he is so adorable! It will be great for you both to get home tomorrow, it's so hard being in hospital away from your family.
    Will be praying it all goes well and look forward to hearing about your homecoming.

  3. I'm sure you know this, but the uncoordinated suck/swallow could also be from being a little undercooked, as it were, and he'll outgrow it soon.