Update for January 20th - from Kim
Today's visit with the kids, along with an afternoon of sun shining into my hospital room and a wheelchair ride throughout the hospital, did good for my soul. I wake up each morning (well, I really wake up at 10pm for an hour-long nebulizer treatment, midnight for vitals, pills and blood draw, 4am blood draw and weight check, 5am X-ray, 6:30am doctor visit, 7am pills...and this is still a better schedule than when I was in ICU) trying to figure out what I can do. Can I get out of bed myself? No, unless the bed is super high. Can I walk to the sink by myself? Yes. Can I get off the commode? Nope -- and do I need one or two people to help me stand up from it? Can I get back into bed without someone getting my legs up for me? Most of the time. And everyday it's a little different and it's mostly two steps forward, one step back so my overall trajectory is great though I go through times of just wanting my legs to work again, darn it, and be able to feel like I'm ready to putter slowly through my own home. I'm not there yet.
I'm also not ready to be discharged to home tomorrow...partly because of this lack of strength, partly because of some more medical issues the doctors are trying to resolve, and even partly because tomorrow is a holiday and there's no staff to train me on all my at-home care (my daily monitoring of blood pressure, lung function, temp, etc.; my 20+ meds a day; figuring out what handicap accessible things I'll need around the house; and all the other post transplant info I need). And I may be discharged to an inpatient rehab program (internationally renowned!) here at UW. I am trying my best to wear my Zen hat and just be cool with whatever but it's hard for such a schedule-oriented person like me to just go with the flow and wait until Tuesday to see how things are but "it is what it is" and I'll just keep on doing my walking and exercising and hopefully be out of here soon!
I'm also not ready to be discharged to home tomorrow...partly because of this lack of strength, partly because of some more medical issues the doctors are trying to resolve, and even partly because tomorrow is a holiday and there's no staff to train me on all my at-home care (my daily monitoring of blood pressure, lung function, temp, etc.; my 20+ meds a day; figuring out what handicap accessible things I'll need around the house; and all the other post transplant info I need). And I may be discharged to an inpatient rehab program (internationally renowned!) here at UW. I am trying my best to wear my Zen hat and just be cool with whatever but it's hard for such a schedule-oriented person like me to just go with the flow and wait until Tuesday to see how things are but "it is what it is" and I'll just keep on doing my walking and exercising and hopefully be out of here soon!
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