Monday, November 18, 2013

Back @ CHOP - Feeding Woes, What Else Is New?

It's only been a month since I've written.

It's already been a month since I've written.

Here we are again.  Like so many other times, the day started out fine.  We were having fun, being silly, taking photos for our Christmas card.  Aidan was in a good mood and no one knew anything was wrong. 

I'd noticed that he hadn't pooped since Friday morning - not something I'm constantly pondering - but when you have a GI kid, it's always in the back of your mind.  I gave some meds to get things going and didn't give it another thought.  We ran some errands, and I actually (insert famous last words here) remarked that he was in a good mood.

As the day wound down, Aidan sat in his high chair with a lollipop, while I cleaned up the kitchen.  I heard his episode of Bubble Guppies end, but no accompanying plea for "Moah Guppies!"

I found this:

My Grandfather on Christmas Day?  Close.
Super cute, right?  Tom and I took pictures and made appropriate amounts of fun of our little old man.  But then he woke up hard.

The all-too-familiar inconsolable screaming.  My mind instantly flashed back six weeks, to the Great Intussusception of 2013, and I immediately knew I had to call the doctor.  Of course we lucked into the practice's worst Pediatrician on call - but it probably didn't matter - we know by now that the Pediatrician can't help us.  He told me what I already knew.  I needed to get him to an ER.  Now.

We made it down to CHOP by 7, and were ushered into a small room called The Wedge - basically a tiny and oddly-shaped triage room that wasn't in use, but served to keep Aidan from freaking out in the crowded ER waiting room.  I appreciated it a lot.  We were triaged and taken back to ER Room 47 - a weird little out-of-the-way corner room with no outside foot traffic (and no working sink.  Yummy.).

By 8:00, we had a plan.  We would X-Ray him to check for belly problems - constipation, gas, the basics - ultrasound him to check for intussusception, and keep an eye on his blood sugar, since he was off feeds and not on an IV.

Absolutely COULD NOT get comfortable :(

The X-Ray happened around 9 and didn't show anything too significant.  Some backup, but nothing earth-shattering.  Two hours later, we finally got the ultrasound, and it looked okay - but we were cautioned that an intussusception is very hard to catch on an ultrasound.  It can telescope - go in and back out - so it can be fine one moment and then very not fine the next.  But as I said - the ultrasound looked okay, and no one really had answers for Aidan - so around midnight, GI was paged and the admission process was initiated.

Around 12:30, at GI's recommendation, they gave a suppository - but there was no effect.  An hour later, an IV was placed, and by 2am, we were brought up to trusty 5 South (5S11).  We settled in and I spent an hour or two working and rescheduling meetings before passing out for a couple of hours.


After three luxuriously interrupted hours of sleep, I was up for the day to meet with the Attending, and talk next steps.  We gave Aidan an enema in hopes of moving things along for him, but with really unexciting results.  Aidan was given meds by G-Tube, which he promptly vomited.  Over the course of the day, the Attending avoided us like the plague - nothing happened for Aidan at all, other than that he slept and seemed to move past a lot of his discomfort.  He settled into a pale and lethargic state that made me feel absolutely awful for him.

Finally, toward early evening, I cornered the Attending and forced the conversation.  What are we doing?  Well, it seems that his GI tract is shut down right nowWhat would do that?  Well, you know, we talk about viruses...  

The V word.  It's the dirty doctor word for "I don't know, but I need to say something, so I'll say this."  A virus is a thing that you don't treat - you just wait for it to go away - and it's the most frustrating thing for a parent, because when your child is hospitalized, you want someone to DO SOMETHING!  Fix him!  Make him better!  Help him!

But sometimes you really do just need to wait, and watch, and hold him when he cries.  And then celebrate the successes - like when he's feeling better enough to make a mustache out of his IV tubing.

This kid... I can't even...
I suppose at some point, someone should start trying to feed this guy.  I wish someone would tell me why his GI tract just stops working for no good reason.  While we're making wishes, I wish someone would tell me why his stomach stopped working at all last January.  And why we're now expected to shovel strawberries into it with any measure of success.  But that's another rant for another day, and I'll really, really try to come back and write about it before the next hospitalization.