Sunday, March 2, 2014

Days +191 to +192: Update

Here is the latest on Ezra. His hemoglobin was extremely low early Saturday. They did not want to transfuse because if he is destroying red blood cells, he could have kidney problems if he destroys the cells coming from the transfusion. They held off for a day, but his hemoglobin did not improve, so they were forced to transfuse him today. They gave him half of the normal size unit and ran it very slowly. He is being watched closely for signs of kidney problems. He may need another transfusion tomorrow, depending on his counts. It will be a very scary two days while we wait for signs of kidney problems and to see if his hemoglobin holds. 

Ezra's platelets have started to slowly increase. They are still very low, but better. This is one indication that the treatments are starting to work. His neutrophils and white blood cell count have also improved. 

Ezra feels rotten with all that is going on inside that little body. He is really wiped out. Hopefully, his body ceases fire against the red blood cells and his counts will improve soon. And his leg pain is back with a vengeance as his marrow is chugging away to replenish all that has been lost. Déjà vu. At least his back is feeling better from the bone marrow biopsy. 

The doctors think that these auto-antibodies are the result of his new immune system not yet working properly. He has a lot of B cells and not enough T cells. They believe the T cells and B cells are not yet communicating properly and the B cells are over-producing antibodies. The awful irony of it all. 

For now, it is day by day at Chez Sloan as we watch and wait for his counts to improve and for Ezra to feel better. We will continue to update everyone as we navigate this very scary bump in the road.