It was a rough night. I thought these issues with GI for Grace would be over.. I mean I know her biggest issue is life is really her belly & G.I. issues, but I would've thought that the middle of the night holding her tight would've been a thing of the past. Not last night.
As much as she has grown, matured and come along in her development - the one thing that really holds her back is her fckn* belly! She is gtube fed for nutrition, but as you have been reading in the blog & on my facebook page, she is eating like a champ! The hope that someday we will be able to get the gtube out is definitely in our tunnel vision and then it's not. I'm sad.
Grace has had a bit of a fever this week.. a little congested cold. But mid-week, I did notice that it seemed her belly was bothering her. One thing for sure, we need to really track her pooping. :( (God knows I need to track my own).. As life would have it, in the morning I was having full panic attacks with my own GI issues.. but honestly I would take that on again if I didn't have to watch Grace go through it too.. (and especially not in the same day).
We had gone to visit friends with dinner and got back about 7:00.. Grace was almost overtired so took awhile to fall asleep. Around midnight though, she was screaming and grabbing at her gtube/belly.. usually when this happens she has to poop. We had given her a little bit of an enema and got some out earlier.
Around midnight, she was up yelling in pain - and with a typical kid, you might be able to figure out what's wrong, but with a special ability child it's definitely harder. She usually likes me to hold her tight when she's in pain and that's what I did. But it seemed nothing was soothing her. Gave her some pain meds and she fell back asleep. Two hours later, she was thrashing and screaming again. Gary & I felt defeated, especially just trying to figure out what was wrong. At some point she indicated she didn't want her pj bottoms on.. so yup, here we go again.. it was definitely gas pain or having to poop. We were able to give her tylenol, and some gas meds...
I don't know .. i'm sad this am, because it's been so good with her and belly pain.. months of things going smoothly. And now after last night, I don't know what to say.. trust me after what I had been through in the am, I would've rather gone through that again in the middle of the night then to see her go through it. :(
Certainly hard to watch your kid go through pain.. I hope she is better today.. I PRAY she is better today..
pattie
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