Yesterday they gave B another exchange transfusion. They were hoping maybe a second transfusion would give him a sustained recovery from the hemolysis. But, this morning his hemoglobin is already down to 8.9 from 11.4 last night. Looks like it didn't work, even temporarily. Now they're talking about starting IVIG on him tomorrow. They aren't sure if that will help either but they feel it's worth a shot. It's so frustrating that they still don't really know what is going on or how to help him and the more frequently he is transfused the more problems that can stem from the transfusions. He now gets something called a feratin test every week because iron builds up in the organs of patients receiving frequent transfusions and iron build up an cause other issues. Due to the hemolysis they also have to monitor his bilirubin levels closely to make sure he isn't jaundice.
In the good news department he is doing better from a respiratory standpoint. They are switching him from High Flow oxygen to a regular nasal cannula this afternoon. He also started bottle feeding again yesterday and is taking feeds pretty well so far. He still has a long way to go before he wouldn't need his tube feeds but it's a step forward.
These days I'm all about small victories!
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