Right now B is starting his third IVIG infusion. It will run over the next five hours. Once that is finished he'll head back to the OR to have another PICC line placed. He needs a second line because he basically has a traffic jam of IV needs: TPN nutrition, blood transfusions, IV meds, IVIG, pain management, and chelation therapy. Last night and this morning he received all of his two month vaccines and tolerated them very well. Tonight he will get his first dose of the chelation medication. He'll then get that every night from here on until he is no longer transfusion dependant & taking on iron.
Dr Daniels came in this morning and said they had heard back from two of the hematologist they reached out to to consult on B. One suggested an immunosupressive therapy with a medication called Rituximab. It would suppress his B cell immune response and basically reset his immune system with the hope that once "reset" he would stop hemolyzing. During treatment, and for six months following, he would be particularly susceptible to a specific type of pneumonia -- pneumocyctis pneumonia or PCP -- so he would need to be on a strong IV antibiotic called pentamidine. The other suggestion was to remove his spleen, which is a primary site for red blood cell hemolysis. The hematology team will meet this week to discuss these options and they're also hoping to hear back from a few other hematologists.
Oh, and if you look up toward the top of the blog you'll find a new tab called "Quick Reference". This summarizes B's medical history, meds, docs, etc. Feel free to check it out!
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