Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Well it has been super crazy time over the last month with Josiah, on October 28 he had his G-tube inserted which was more difficult than I expected. He was on moriphine for a day and a half and was in so much pain over the next week, he didn't want to do anything but lay in bed and sleep or watch tv. While in hospital his BS was low while he was on the glucose IV and pedialite but once they started formula through his tube and he actually started eating his sugar was super high, so they actually had to start him on a daily injection of insulin at bedtime to go along with his overnight feed to keep his sugars more normal, which we are having to do at home now....they also discovered that he has high blood pressure and now he needs to see a kidney specialist to see what is going on there. We have been seeing a pediatric neurometabolic specialist and they are doing tons of testing to see if he has a metabolic or mitochondrial disease that is affecting him. He is also continuing to have gross/fine motor regression so they are trying to find an explination for it all. It has been so frustrating and stressful and busy, we have had 19 appointments in the last two weeks. I don't know what is going on with him but hopefully they will get to the bottom of it soon. Has anyone had anything like this.....can anyone shed any light for me? I am so far behind on reading the listserve emails, I have over 1000 sitting there for me to read. Hope all is well with everyone. R. Mom to Josiah 29 months RSS, Hannah 4 non RSS Quote Link to comment Share on other sites More sharing options...
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