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We saw the GI today. When we got there and they weighed him I knew we were in trouble. He gained a whole .5 pound! Yes, 2500-3000 calories all but two days in the last 2 weeks and he gained a whole whopping .5 pound! The GI walked in and said, well he gained weight this time so I think he just had a bug or an allergy issue and started to wrap up!!! I was NOT going to let THAT happen again. I said several times how much he ate and how his weights have been over the last several months. I said "Look in the chart at the last 6 months' weights!" (There was no hiding how peeved I was. ) He did, shook his head, looked up and said, "You're right." OF COURSE I'M RIGHT!!!! GRRRR!!!! After that he listened to what I had to say, looked over the cinci records I brought with me, asked ME a few questions, and then proceeded to be puzzled. He had no idea what HLH was and a very remote idea of what SDS was. I knew the symptoms I mentioned and such but had no idea what the tests were that they had run, what the disorders were they were looking for, or any idea what to do next with Danny. He said that I knew more about Danny than he would understand without researching quite a bit. I felt quite proud at that point. He said that he wanted to send him to Endo...then I reminded him that he already did. He said that a feeding tube would be useless because no matter what they pump in, it most likely won't get absorbed anyway if what he is eating now isn't. Then he said what I REALLY wanted to hear. "Since Cincinnati seems to at least have an idea of where to go from here I am just going to send him back up there." I asked if I could pick which Dr. he referred us to and he said yes!!! I was on cloud 9...almost anyway...at this point. They are going to start on the referral tomorrow when the referral coordinator gets back in and we should know what to expect by the end of next week. He also is checking Danny's Gall Bladder. He is going in for a HIDA scan on Friday. He is NPO after midnight and goes in at 7:30. They said it will take several hours and is an IV contrast test that will show them how his gall bladder is working. He is doing this for 2 reasons. 1, his belly got REALLY distended about a week ago. Only for a day but it was bigger than he can push his belly out and was hard. He wasn't gassy and had pooped just like normal all day. That combined with the constant bile reflux makes him want to check his gall bladder to make sure nothing serious is going on there. Cinci hematology called while we were in th waiting room and said they wanted to draw more labs. These ones can be drawn here and shipped there though. We have to get them done on a Monday though. That means that we have travelled downtown (where all his docs are) 6 times in seven days.... It is a 30-45 minute drive! We are going to have to move closer if this keeps up...
I have never liked this one... He ha been decent though...this time. I mean....Danny really has become incredibly complex. There are so many things that aren't working right that there has to be a "root" somewhere and no one has been able to find it... Sad thing is...he has been practicing for almost 30 years...
I'm really glad to hear that this doctor is admitting that he's in over his head. They don't usually like to do that. Sorry it took so long though. And I'm really glad you'll get to choose his doctor. Maybe with a better medical team, you'll finally be able to get some real answers. It does suck that you can't get the care he needs closer to home but at least hopefully he'll be getting better care.