Wednesday, March 19, 2014

Days +207 to +209: We're Home!

We're home, thank goodness! The doctors decided that Ezra is stable enough to continue his care outpatient and discharged him today. His hemoglobin is slightly increased and platelets continue to bounce around in response to high dose IVIG. He will need to go to clinic three times a week for labs and IV meds. The plan is to continue with the high dose steroids, the immunosuppressant and high dose IVIG for now. The hope is that we will start to see improving numbers and then we will be able to taper the steroids. We are all very anxious to get him off the steroids before they start causing serious damage. 

We also found out that Ezra has antibodies against his own neutrophils as well. This test has been pending for three weeks, since the day he was admitted. Thankfully, his neutrophil numbers have been fine, so for now at least, it seems like that issue is likely resolved. The doctor said there isn't even a name for someone who has autoantibodies against all three cell lines - red blood cells, platelets and neutrophils - so she's going to call it "Ezra Syndrome." Great...Ezra proves once again that he is a very unique child. 

The disbelief over what has happened over the past three weeks is hitting us hard now that emergency mode is over. We were so close to some sense of safety and normalcy and now the rug has been pulled out from under us. Ezra is now about as immune compromised as he was on Day Zero post-transplant. He is on 5 times more medications than he was 3 weeks ago. While we are grateful that the doctors were able to get him to a safer place quickly while avoiding the drug that destroys B cells, Ezra has a very long road to travel to get his cells behaving again. 

Ezra is his usual amazing self. He is obviously thrilled to be home. The other night, he turned to us and said "I'm going to do my best so I can go home sooner." Our brave little man. We wish this was all in his control. The reality is that none of this is anyone's control. For now, we take comfort in watching him run around the house, laughing and playing, and hope for better days ahead.