The doctors told us today that B will be here until at least Thursday. He needs to be monitored while he is on phenobarb, his liver function needs to be rechecked at the end of the course, and because he is still so small he needs to gain 20 grams per day minimum. For a teeny tiny like Brady that's a lofty goal!
Things are looking up though. His bilirubin was down to 4.1 as of 4pm today and his liver enzymes are slowly coming down too. They drew even more labs for even more tests this morning but they say we won't have anything back for at least 48 hours.
His hemoglobin is still pretty good, at 8.8 this morning. Dr Higman sent out a specialized test for something called a warm IGA autoantibody. One of the hematologists they reached out to in Texas said he knew of ONE CASE where there was a 3 year old boy with unexplained hemolytic anemia and it turned out it was due to this autoantibody. ONE CASE. So, its unlikely but worth looking into. I'm not sure how long this test will take to come back but I'm hoping it isn't long!! Before this liver episode they were about ready to start B on the immunosuppressive therapy I wrote about before and now this has set that plan back. So frustrating. The sooner we start trying alternative therapies the sooner we reach potential for a remission!
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