<Tre's Updates>

Wednesday, November 29, 2006

Sugar baby

So as some of you may already know Tre` is hypoglycemic. We believe that it has a lot to do with his liver damage. Fortunately his bili levels have dropped dramatically. It got so high that a brand new liver was talked up. No one really knew if anything can come of this. That’s my boy, prove them wrong!!! So, we don’t know how great they have gotten because his new doctors haven’t checked his levels since he’s been home.

I had the doctor change the orders for his glucose testing. He was getting it every morning and for months he hasn’t had a hypoglycemic episode/ reading. No one really knows how this happened or when hey just caught it and he was diagnosed. So, the only thing that was keeping his sugar up is continuous feeds (Neocate 27 rate of 38/24hrs). As of lately, his sugars have been getting higher and higher. Yesterday morning alone his nurse checked his sugar and it was 147. In the evening I took his sugar, personally (literally) and I got 124. I asked his nurse what “she’d like to see his sugar at and she said between 70 and 90. Now, no disrespect to her but I asked what she’d like to see only as an opinion not for advice. She did, however, tell me that the prednisone he’s on has a side effect that increases the blood sugar. Any event, I plan to call the doctor Thursday or Friday morning so he can monitor what’s going on. I won’t have a day nurse but I’ll work something out.

Without doctors orders I would stop his feed for a half hour sometimes an hour. I do it to give his tummy a break. He get’s extremely distended around the abdominal area. The people that are supposed to follow his hypoglycemia are Endocrinology at CHOP. Right now he doesn’t have an appointment until mid March. That is the ONLY appointment they claim to have.

posted by Tre's Mom @ 4:32 PM

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