How interesting ... as I was typing that, a GI from the fired GI's team came in to talk with me. VERY apologetic for the problem. (He wasn't the issue, he actually seems to have a brain in his head and care and compassion. HE realized all the things this could be too.) I told him that it was very specifically Dr. K that I was upset with since he refused to do anything since last July when these episodes began (they've gotten progressively worse since then). I would even consider staying with him ... but there's a chance I would run into other guy and I am not going to do that! Ironically, remember 3 weeks back when Manny was bleeding? THIS is the same doc who called back, not Dr. K. He actually helped us then. (I told him that.) He wasn't trying to get us back, he just needed to examine him so he could transfer him to the new GI. And since no one had seen him yet, he had to come in.
2pm ... left for the tests
4:30 pm ... tests all done.
1) We had the stomach emptying test. They lace the formula with radioactive material and feed. Then do an xray for an hour to see how it empties. The goal is 45-50% to be gone in one hour. We don't know the results yet but from the untrained eye, there was no where near half gone so that might be a clue. BUT there is more to the story. They put the formula in one syringe at a time. By the time the first one was in, he was already retching. By the time all 3 were in, he was throwing up and miserable. Sweating, red, etc. It was quite clear that something else is going on too. The Patient Support Tech (PST) was there the whole time and was a bit freaked out too. It was scary. They set up suctioning and I had to use it several times during the hour test. He's amazing and laid very still, he cried some at first but calmed down. I sang. He basically passed out at one point and slept through most of the test. He would wake up periodically crying/screaming (Like he does at night). You could see he was totally asleep and then totally distressed and it was tied to some kind of pain somewhere.
2) Gall bladder and Liver ultrasound. Did that because his liver enzymes were elevated yesterday.
3) More blood tests. He is a very, very difficult stick. Even the IV team has challenges. The same lady (Mani) from yesterday did it again today. She tried forever at one vein but just couldn't get it to bleed. Finally got a vein in his ankle and had to "milk it". They ran the CK Blood test (to test for muscle fatigue, specifically the heart). And one about a liver issue (genetic type test).
As I type this, his heart keeps going between 160 and 190. (He's still periodically retching and they fed him at 2pm).
I have a feeling we're going to be here a while.