Dr. Expert was in this morning and very knowledgeable on what might be going on but he wants to run another study to get a test that wasn't ordered the first go round. It wasn't an oversight, just the first doctor didn't think it was needed. Right now it looks like it may be a pituitary or liver disorder. Apparently not responding to the glucagon rescue is a large clue. The doctor said a few scary things (including leukemia - when does that word go away?) but the one that scared me the most is that if the next fasting study goes without incident than they are just going to assume the first was a fluke, that this is all related to the dumping syndrome, and we can go home and he will be fine. I know he is not fine, I have seen too much and held too much and ached too much to know he is fine. Which means we need to have another scary night so the doctors keep paying attention. That is such an inside-out way of thinking that I half wonder if I haven't gone wholly insane.
In the meantime here are some peek-a-boo pictures. How is it that the spirit of a 20 lb baby can be enough to carry all of us through this?
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How can they assume the first study was a fluke!! He was doing that at home too. Was it a fluke there too. Now I have to pray for a scary night for you, that's crazy! But sending you guys home with a slap on the back and a thumbs up is even crazier!! Or more crazy? Which is it?
ReplyDeleteUGH! Keep us posted
So sorry you have to go thru this again. That's crappy. But it sounds like you MAY be getting a little closer to a diagnosis. Praying and crossing my fingers for you :)
ReplyDeleteOh my gosh! When is the next fasting study? We are praying!
ReplyDelete