After a fun-filled 45 days and 44 nights (as the travel industry would say), Ray came home from the hospital. That was Thursday, February 24. It's now March 6. The hospital seemed like forever to me but not to Ray. Now I'm the one saying where does the time go?
It was a little hectic trying to coordinate things before Ray came home. Carpets needed cleaning. Rooms needed some re-arranging. The house needed an overall mini-sterilization. I had commitments at work that I couldn't change. But thanks to my family and a very generous sister-in-law, we were able to get things together for the return of our beloved husband, father, and brother, Ray.
So Good to be Home
That heading says it all. It's soooo good to be home. There were several times in the hospital that I told Ray, "I just want to take you home."
It reminded me of one of my favorite stories when I was a child, Heidi. In the book (and movie) Heidi stays with a little girl that is ill and all Heidi can think about is taking this girl back to her mountain home where she lives with her grandfather. She is positive the mountain air will make the girl better. Sure enough, the girl comes to visit and gains enough strength to be able to walk again. And Heidi says over and over, "I knew it would make you well. I just knew it."
Coming home has been healing for both of us. We are grateful to have survived that tremendous ordeal, incredible journey, strenuous mountain climbing, or whatever it should be called, bone marrow transplant and hospital stay. We are grateful to be together. And we are grateful for Ray's gradual return of health and strength.
Transplant Updates
We are now at day 46 (they gage everything by the post transplant day number.) Ray has updated his blog with several of the things that are happening now--IVs, pills, Dr. appointments, lab draws, etc. I feel like I do almost as much nursing here as I do at work--and sometimes a little more with a 24/7 shift at home. Ray was worried at first that I might not remember all the pills and medications. I wondered what he thought I did at work. The medication schedules, IV administrations, injections, blood pressures, and so on are no biggie. It helps me to keep my nursing skills up since I'm not working as much right now. I guess it also gives Ray an opportunity to see what I've been doing the last 30 years.
Ray still continues to fight GVHD (graft verses host disease). Even though GVHD is common post transplant, it is also the #1 cause of fatality post transplant, so it's not to be taken lightly. This was the main reason for the extra 2 week hospital stay. They (and I) were a little nervous that Ray's total body rash came back (the first sign of GVHD) four days after leaving the hospital, since he was still on the highest dose of prednisone deemed safe (200 mg/day as opposed to a normal 5mg/day dose when needed). And prednisone is the treatment for GVHD.
In the hospital he was receiving almost all of his medications through the IV. Now he is talking all but two of the 17 different medications by mouth (during the course of the day he receives 33 doses of these different medications). Since oral absorption is different than IV, we are still trying to adjust drug levels in his body. The trickiest drugs are the anti-rejection drugs. They have changed one of his drug's dose 4 times over the last 10 days. They are hoping that the GVHD flared a little because he wasn't at a therapeutic level on this anti-rejection med. It seems like that might be the case because the level is going up and his rashes are going down. Good!
Settling In
We're getting used to this new routine of being home. Being around each other 24/7 takes a little adjustment especially if we're both tired. I think he over exerts at times and he's just glad to be free. But I'm grateful for that kind of adjustment. Besides, we get to go out on little outings and I get an occasional trip to the store. I'm glad that the doctor said to keep trips to an hour because it keeps me from spending too much.
It is nice to think that the chemo treatments should be behind us. He's still not out of the woods so to speak. There probably will be some more rough road ahead. But for now, I'm going to enjoy being together without beepers, tethering IVs, bothersome coughs, or constant interruption. It's nice to be home together.
No comments:
Post a Comment