Day +98
WBC 9.1
There is not much to report on the medical front today. Max's dialysis went well. They had to turn his dopamine up during the run because his blood pressure dipped, but that is not uncommon. Otherwise, he has been pretty stabile. The doctor told Mike today that it was time to "fish or cut bait" with the GVH. (I think that is what he said). In other words, it is now or never. His skin has been pretty stabile the past few days so they reduced his steroid dose today in the hopes of making him less immunocompromised. They want to see if he is going to have another flare. If so, I think they will hit it with another treatment, which has yet to be determined. GVH is a horrible, horrible thing.
In other news, Mike's mom will be staying a few extra days until his sister can come up and help out. Max has had so many things happen the past few days that we need to be able to both be at the hospital if things go wrong. So, thanks Grandma Chick, Dana, Auntie Katie and Grannie who are all making arrangements to come this week.
Grace caught a cold so she has been cooped up in our room. We are hoping she feels well enough to attend the RMH field trip to McDonald's and the new Cat in the Hat movie tomorrow afternoon.
Two things made me happy today. Since he was so stabile, I got to lay with Max in his big bed tonight for the first time. It was strange but very nice. Also, Mike and I watched some footage we forgot was in our video camera. It was from May to July. The last footage was in our room at the RMH. So much of it made us laugh out loud. Grace is so good at making her brother laugh. I imagine that is what he has been thinking about this whole time. It is hard to think that the boy on the video who was crawling, dancing, babbling and trying to walk is the same child I look at right now. We want him back so badly. Please keep praying for this to come true.
We have been receiving so many emails recently and we apologize for being so tardy to reply. Please know how grateful we are for them.
Good Night,
Margaret
There is not much to report on the medical front today. Max's dialysis went well. They had to turn his dopamine up during the run because his blood pressure dipped, but that is not uncommon. Otherwise, he has been pretty stabile. The doctor told Mike today that it was time to "fish or cut bait" with the GVH. (I think that is what he said). In other words, it is now or never. His skin has been pretty stabile the past few days so they reduced his steroid dose today in the hopes of making him less immunocompromised. They want to see if he is going to have another flare. If so, I think they will hit it with another treatment, which has yet to be determined. GVH is a horrible, horrible thing.
In other news, Mike's mom will be staying a few extra days until his sister can come up and help out. Max has had so many things happen the past few days that we need to be able to both be at the hospital if things go wrong. So, thanks Grandma Chick, Dana, Auntie Katie and Grannie who are all making arrangements to come this week.
Grace caught a cold so she has been cooped up in our room. We are hoping she feels well enough to attend the RMH field trip to McDonald's and the new Cat in the Hat movie tomorrow afternoon.
Two things made me happy today. Since he was so stabile, I got to lay with Max in his big bed tonight for the first time. It was strange but very nice. Also, Mike and I watched some footage we forgot was in our video camera. It was from May to July. The last footage was in our room at the RMH. So much of it made us laugh out loud. Grace is so good at making her brother laugh. I imagine that is what he has been thinking about this whole time. It is hard to think that the boy on the video who was crawling, dancing, babbling and trying to walk is the same child I look at right now. We want him back so badly. Please keep praying for this to come true.
We have been receiving so many emails recently and we apologize for being so tardy to reply. Please know how grateful we are for them.
Good Night,
Margaret
posted by Mike Ciacciarelli
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