I am getting ready to head down to Hopkins, so I figured I would throw an update out for the world in case they were interested :)
She is doing much, much, much better. Did I mention much? Most of her skin is back to just a sunburn color, almost all of the falling off skin is starting to come off, she can sit up for a better portion of the day now, and actually stand for short periods of time, and she was ordering the nurses around yesterday...always a good sign for her (not joking - the nurse walked in and she said 'so this is the plan for this evening'...good to know that's what you had decided the plan would be I figured he was thinking). We are figuring she'll be kept in the hospital until early next week. We talked to the doctors yesterday and apparently the main thing they are watching for right now is that all of her skin heals without any new infection, all the swelling goes away, and there is no indication the GVH is impacting any other organs. They have taken her off one of the antibiotics, and starting decreasing the steroids, which was good. And her white counts are actually in the normal range. Her hemoglobin was low, but when they gave her blood she only needed one unit instead of two to get it back into range, so that is good. And her platelets seem to be ok, because she is clotting at spots that her skins starts bleeding. Her lips are starting to heal and she can almost talk normal - her friend Patty told the nurse yesterday she would have a talk with him on how to deal with her once she can really start talking again :) And her eyes were almost completely open yesterday, a lot of the swelling has gone away.
So, all in all, we are on the way to recovery. That, however, was not fun. I'm pretty sure everyone agrees we should not plan to do it again, anytime soon...how about anytime ever.
PTL!
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