Sunday, January 26, 2014

Days +151 to +157: Two Steps Forward, One Step Back

This week we have been able to cross some things off the worry list while adding others. First, the mysterious rash has disappeared. We stopped the Benadryl earlier in the week so that the doctors could see the rash, but it never came back. Phew. They think it was either the parainfluenza virus or an allergic reaction or his new T cells figuring things out. There are certainly a lot of new things going inside his body, which makes it hard to sort this all out. We won't worry about the rash unless it returns, and hopefully we've seen the last of it.

Second, Ezra has cleared the parainfluenza virus! He is still coughing a little, but he is much better. Big sigh of relief on this one. 

Unfortunately, Ezra's liver is back on the worry list. His liver levels jumped back up this week, and another liver function level is now also high. Previously, when this level was normal the doctor said that it was "reassuring" that it was normal. Now that it isn't normal, we're not feeling very reassured. The doctor does not think that it is GVHD of the liver based on how his numbers have been trending, but it may be an infection or other damage to the liver. They are hoping that the high liver levels are still from the parainfluenza and will go down with more time away from the virus. We will see what this week's levels show and maybe we can chip away at that worry list some more. 

Ezra kept busy this week during the snowy, freezing weather by making Minion cupcakes. Of course, Mr. No Sweet Tooth wouldn't eat them, but he had fun making them!