Made of Gray

Don't Rock The Boat

Holly D Gray2 Comments
If it isn't broke don't fix it.

Caleigh's GI issues have been stable for the last 2 months. We haven't seen our GI doctor in 2 months, which is an all time record. We had our appointment last week and because Caleigh has been doing so well we all decided to shake things up a bit. I called it optimistic as soon as we walked out of the office that day.
Here we are one week later. Liquid stools, red bottom, coughing and retching more.


Caleigh has been getting 50ml an hour for 22 hours a day. We also give 120ml of pedialyte for extra fluid throughout the day. She will get a "taste" of foods here and there, but we really haven't been trying to feed Caleigh. Quite honestly I have no interest in it right now. The other night she did share a grape sucker with me, but that's about as far as we go. I'm just terrified that she will have a reaction and then end up back on TPN.

So the plan is to go up on the volume little by little cutting out a few more hours of feeding time. We call it freedom time. Caleigh is free from the tube and we are free from watching the tube. Life just a tiny bit simplified.

This week we went up 1ml every 24 hours until we reached 55ml an hour for 20 hours a day. 5 more mls and 2 more hours off. The plan was to stay at that rate until we knew for sure that Caleigh was tolerating it.

Two days into the new rate and Caleigh started moaning in her sleep and then the stool started. It hasn't really stopped either. Last night we put a halt to the new plan and dropped back to where we were. This morning a dirty diaper woke us up at 6am. Caleigh usually doesn't get up until 7:30. Maybe things will get better today in the stool department but it didn't exactly start off great.

We've also started her back on the ulcer medicine. She has been off of it for 2 weeks. The two changes overlapped too closely. So there is a chance that she still needs the med as well.

Back at square one, we'll give her some time to recuperate and then try going up more slowly next time.
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