Monday, September 13, 2010

Feeding Team Update

Let's start with the good news. Jaxon gained weight! He weighed 22lbs 9oz with his clothes and diaper on - that's almost a 1lb gain since he last saw the feeding team. We have no idea how he suddenly gains weight like this, especially when he's in full force vomiting and diarrhea mode.

The not-so-great news is that the feeding team doesn't want me to move forward with any sort of thicker liquid/food for feeding practice. They think his medical issues need to be addressed before moving forward. So I'll continue with speech/feeding therapist at the house weekly and just work on what we've been doing. Which hasn't been a whole lot lately since Jax has regressed since getting more pukey in the past few weeks. The Feeding Team-GI doc didn't see Jax today (which I thought he would, but apparently he wasn't scheduled to), but he'll he see him in 2 months, and then the Feeding Team 2 months after that. So that means the Feeding Team doesn't want to reconvene for FOUR months. That made me feel quite defeated. I mean... I understand, and I guess I'm not totally shocked, but it's still disappointing nonetheless. I left the hospital with Jax feeling bummed.

I saw Jax's regular GI nurse on our way out and she waved us down in the hallway asking how the Benefiber was working with his diarrhea (how often do people ask YOU that? :)). I told her it didn't work, so she's discussing it with the GI doc and calling me this week to try their next idea. I was happy to hear they had another idea honestly.
I briefly spoke to her about the story I saw online of the girl with the pace maker in her stomach and the nurse thought it was fascinating, but hadn't ever heard of any pediatric GI patients at hospital ever doing it. I will certainly be talking to the doc about that in two weeks.

Last night I went into Jax's room around 10:30pm to take him off his "dinner pump" and I could smell that he had diarrhea in his diaper. Remember, I was waiting to see if not going yesterday would mean a possible "firm up"? Well it didn't. So we had to wake him up and change him so he wouldn't sit in it all night, thus causing awful diaper rash. Well... waking him up on a full tummy caused an awful vomiting episode. We felt SO bad for him because he was sick for about 5 full minutes emptying his stomach. We got him cleaned up and changed and he went to sleep as if nothing happened (while I laid in bed in tears after what had just happened). Ugh... I hate this. Oh, and he had diarrhea again after falling asleep, so he still woke up with a diaper rash (despite all the Vaseline we had on him). Of course right? Oh the irony...

In funny news, Jason was with Brady at the house while I was at the hospital with Jaxon and he said that Brady poo'd in his diaper and then walked up to the baby wipe container, grabbed a wipe and pretended to wipe his bum. That kid is hilarious.


Laura said...

I am so sorry Annie.

Alicea said...

I'm so sorry, how frustrating. I know I would feel like that after Kyle would take a bottle when he was younger and then throw it all up, because like Jax, every calorie counts. I sure hope you find something that works for him soon. I just can't believe all those doctors can't figure it out. I'm praying for you.

Heather said...

Late with my blog reading. I am so sorry. Don't lose hope, I know YOU of all people won't. Those four months will be here quickly and maybe Jax will be surprising the team by then. I don't put anything past that tough guy (or his tough mama).

And WOOHOO for gaining weight!

Jenn said...

Major hugs for you right is so awful when you feel like you just can't win. What a trooper Jax is...and you!