The mantra (day 12)

Slow, steady progress. It's a mantra.

Today has been really frustrating for Nancy, she has said so repeatedly. She still can't talk, but she's mouthing words often. She's got more strength in her legs, still barely able to move her hands. And she's holding her head up on occasion. Some parts of the day have been really uncomfortable, with a lot of pain in her back and neck. She's been breathing on her own for nearly the whole day.

We've had a lot of visitors, her niece, brother, father, several friends...I think there were a total of eight. We watched some football, spent time trying to find comfortable positions for her by moving pillows, had some good conversations, got her to smile. At one point, we tried putting a Passy-Muir valve on her tracheostomy so she could talk, but her throat and neck still seems to be too swollen for that to work. Soon it will, and some of the frustration will be gone.

The neurologists are happy with her progress, and repeat that it will be weeks, perhaps many weeks before she has her strength back. Kidney function is about the same, maybe a little better. Oncologists are happy too, as almost all of her GVHD symptoms are gone. Yesterday, the dialysis removed a lot of fluid, so she isn't as puffy today. And the swelling on her neck is going down some each day.

She got really angry with me yesterday, and expressed a lot of frustration...and this is all good. They don't want passive patients in the ICU, she wants to get out of here, and that is really a good thing.

Love,

-tdc