Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Good morning Lots of updates to pass along. is stable, is starting to sign again, and is going home today. That's the good news. However, the results of her manometry and upper GI are in, and the news is not good. has gastroparesis and neuropathic pseudo obstruction. Her guts just plain do not work. Also, her hernia is now a full third of her stomach and is very floppy and waiting to strangulate. The surgeon wanted to operate today but Dr. Korson felt that a Friday afternoon was not the best time to do major surgery on a mito kid. So we'll be returning to have it done on the 25th. has made lots of progress but she's still a very different child from who she was in August. Her spunk is showing signs of returning and she's telling me what she wants. I think her difficulties will be more visible when we get home and she's surrounded by toys that her hands just can't operate. She'll be using a stander so that's one more piece of equipment in our tiny house. Cathing is going well but it's one more thing to add to our already overwhelming routine. Luckily our nursing hours have been increased but that depends on the agency finding nurses to fill them. So here we go. Wish us luck. Our home computer died so we're using the laptop most of the time. My email address is mom2colemankidz3@.... Heidi, 's Mom 2 years, complicated mito kid. www.caringbridge.org/ma/heather Quote Link to comment Share on other sites More sharing options...
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