Tube Change - January 2015

January found us inpatient for a tube change (I can't believe it's already been three months!).  It's been a tough month for Aidan for a number of reasons, so I wasn't sure how this hospital visit would go, but they're certainly not optional, so off we went.

This was an important visit for Aidan.  For starters, it was his first hospital stay where he used a hospital bed instead of a crib.  Maybe it was a bigger moment for me than for him, but seeing him in that bed was such a morale-booster.  This time last year, we weren't sure he'd ever understand that he couldn't just wander out of a bed while attached to his IV pole.  The safety awareness just wasn't there.  He's made so much progress, and something like this is a real, tangible sign of that progress.  Oh, and also, glorious, glorious legroom!

Anyway, when we settled in on Tuesday night, Aidan kicked things off by having random rashes pop up that scared the crap out of me.  He was fine when we arrived, and of course (just to freak me out), they only started appearing when I started eating my (non-fish) sushi.  He didn't eat it, he didn't touch it, I didn't touch him.  But the same thing happens to him pretty frequently out in public - mall food courts, restaurants - it's hard to believe it's not food-related, you know? 

Little rash on his back - okay, no biggie...

And this thing on his chest - okay, I can see how this might show up...

Little tummy itchies, no big thing...

GAH! What happened to his face!

Oddly, we were up on 4 East, which is surgical/trauma, instead of 5 South (GI).  His paperwork was processed as a G-Tube initial placement instead of a GJ change, which was... interesting to sort out.  4 East is not my favorite place to stay - the rooms are shared, which is always kind of awkward when you have a screamer.  I hate feeling horrifyingly guilty about my kid freaking out while some other poor kid is trying to rest and recover from his hideously painful testicular torsion.

Anyway, we had the usual drama around IV placement - four fails before we finally got one in.  Aidan's gotten fantastic at sounding unspeakably sad and accusatory.  "Why did you just hurt me, doctor?"  "Please stop with the ouchies!"  After much ado, we got the IV in and fluids started.  I gave Aidan his reward - a new Chugger - even though he admitted that he "wasn't brave because he just cried and whined and said ouchie".  Still brave, kiddo.  Still brave.

Sad boy, warm flippers

Drama's over, new train on board

First thing Wednesday morning, Aidan and I went down to IR, and the real fun got started.  He coughed - I'm not even joking here - ONE TIME in the elevator, so the whole sedation plan went out the window.  No ketamine for Aidan, he was forced to remain kinda-sorta-awake/kinda-sorta-sedated.  Horrible.  He was awake and screaming (despite the versed) when I left him in the IR room, and awake and screaming when I got him back.  I'll go on ahead and assume he screamed the whole time.  Thanks for traumatizing him when that's precisely what we were trying to avoid by admitting him, fasting inpatient, and sedating him.

Before things got crazy up in IR...

 Anyway, when all was said and done, we were the proud new owners of the AMT G-JET.

He "woke up" from his "sedation" pretty hard - he screamed at everyone and everything for a few hours before finally passing out.   Poor kid.

Side note - I know they need to put leads on him, but isn't there anything that he's not allergic to?  For flip's sake, this poor kid's skin...

 Anyway, we spent the rest of Wednesday ramping up feeds, titrating down IV fluids, and checking blood sugars.  The only issue we ran into was a random low blood sugar when the nurse was a few minutes late with his formula refill.  Not even joking, we're talking 5 minutes off formula, and he ran low.  Poor kid just can't keep his sugars up on his own - which we know, but it's always kind of a crazy thing to see how fast he drops.

The team in the PACU gave Aidan a "Brave Kid" Cape and he wore it all over CHOP as he explored and recovered.  What an amazing, empowering thing - everyone he saw stopped him to gush over how excited they were to meet the bravest kid in the hospital.

 All in all, it was a good stay, and Aidan actually tolerated his feeds better than ever before.  Maybe next time, we'll be home same-day!  Which means that this little nugget will get to spend a bit more time in his own big boy bed.  Fingers crossed!