Friday, April 12, 2013

April 5th - Visit to CHOP Exton

It was a really underwhelming visit to CHOP Exton.

We got Aidan's latest Stats, which were - you guessed it - underwhelming:

Weight - 10.801kg - 23lb 13oz - 3.4%
Height - .816m - 32" - 1.3%
Head - 47.5cm - 18.7" - 15.7%

And then we spoke with Dr. Liacouras about where we are and what to do next.  Since Dr. L is a bullet-point kind of guy, I'll give you a bullet-point kind of update.

  • J feeds are generally being tolerated well.  We will step up to goal of 60mL/hr over 18h. 
  • We do not know whether or not Elecare is causing Aidan problems.  We cannot know this until we scope.  Behavior suggests that Elecare is not well-tolerated, but scope is
  • We agree that we should scope as soon as safely possible.
  • Dr. Liacouras will check in with Anesthesia to determine how soon after hMPV we can scope Aidan.
  • We will call Dr. Liacouras's office this week to update them on Aidan's progress with J Feeds.

As far as how we're doing - it's really hard to say.  Mostly he's doing well - he's not throwing up (he's nearly physically incapable with the placement of the GJ Tube.  But he's still struggling with symptoms that leave me wondering whether this formula is the best thing for him.  He's awake a lot at night, growling and grunting and crying.  He's extremely emotional - which is either a symptom of being a toddler, or a symptom of a reaction.  We just don't know :( 


Update  - 4/12

Things are pretty much the same, except that Aidan seems to be over the cough and runny nose - so I've been pushing Liacouras harder to order the scope.  I finally heard this morning that the orders are in, so now we just wait to hear from the scheduling department (I should hear by Monday or Tuesday) and hope that he passes muster with anesthesia.

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