5/22/18 BMT Day +20 How much longer?

Today Reese surprised us all by being… Reese! She was back to her normal, spunky, playful, endearing, fiesty self. She was up and about… crafting, painting, board-gaming, reading, walking… one of our doctors hadn’t seen us since Friday and there was a lot of, wow! I agree, she came a long way in a short amount of time. Sayonara VOD, we are thankful you have made your way to the door!!!
Reese’s NG tube (feeding tube) came back today, much to her disapproval. It’s for the best and it gets her off TPN (IV nutrition) which is not good for her healing liver. Each day she will get stronger and eat more on her own until one day she won’t need it anymore. For now, she can continue on with edamame and apple juice until she chooses to dabble in a few other food groups.
So, what will determine how long we will be in the hospital? A BMT hospital stay for someone like Reese varies a lot and is anywhere from +30 to 40 (to 50 or more days in extreme circumstances). This is the hot question. A few things could determine this for Reese…
-VOD med Defibrotide. She has to finish the full course (which happens to end on JUNE 1.)
-CMV reactivation. Her CMV counts need to return to zero before discharge. They were 200 last Monday and 2,000 this Monday, so we aren’t headed in the right direction, yet. The doctors assure me this is an “expected” complication and it will eventually be under control (she has no symptoms and no pain from this.)
-An unexpected surprise (so far so good, our prayers are being answered and the best minds are keeping an eye on this!)
She is on the right path. I am going to bed feeling thankful and blessed. More days like today would be wonderful (and my kids only need to be apart NINE more days!)
Pictured: The two of us, on our way to the BMT playroom today.

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