Hello Again

Number 1 Blogger Back on Board

So you've probably seen that Ray has surfaced enough to blog again. Yea! Since I have been way overwhelmed this week with inside-of and outside-of hospital duties, I was glad to see he was able to post and keep everyone updated.

I worked a couple of days this week, attended some work related meetings, arranged to meet with doctors and nurses as they discussed and made major changes to Ray's treatment, tried to be available for Ray during his diagnostic procedures, as well as doing my usual care-giving duty: seeing to the comfort and care of my #1 patient. By the end of the week I felt pretty exhausted and overwhelmed.

Last night as I got ready to leave, Ray asked, "Are you going to stay up here?" Skipping a 50 minute drive home alone in the dark sounded so good that I drove down the hill and was checked into the Marriott in less than 10 minutes. I felt like I was in heaven. The beds were so comfortable and it was dark, warm, and quite. I slept so long that I missed the hospital Sacrament Meeting this morning. I also got a late check-out so I could return to take a Sunday early afternoon nap. A little extra sleep and a touch of spoiling can go a long way. Guess I better not get used to it.

The Jury Is In

Well, as you have probably figured out or read by now, they have diagnosed Ray with graft verses host disease.

The good news is 1) They are calling it mild--grade I or II. 2) The steroids seem to be helping with the symptoms. 3) They feel they caught it early so the treatment seems to be working. 4) He's feeling a lot better!

The not so good news 1) He has to take large amounts of medications with some possible scary side effects. 2) The length of time that he has to take the anti-rejection drugs with their not-so-fun side effects has just doubled. 3) The overall recovery time will be increased.

I didn't take this diagnosis lying down. I guess this might have been one time that I wished I didn't know so much. I was a little feisty, making them hold off treatment until they explained completely why they had come to their conclusion. I actually told Ray to refuse treatment until we had a chance to sit down and talk things over with the doctor. I think I might have caused a little stir among the care-giving personnel. But I knew this change in treatment could have major effects on Ray and quality of life. So I wanted them to be sure. It wasn't until today when I had a chance to talk with Dr. Peterson, the medical director of the BMT program, that I was finally able to feel a little more comfortable about the direction of treatment.

Transplant Updates

It has now been an entire week since Ray has had anything other than ice chips to eat or drink. It's been over two weeks since he's had a meal of any substance. He says he really doesn't feel hungry but today food is starting to sound good to him. It's strange to think he hasn't eaten anything for that long and amazing to think that they have figured out how to nourish his body through the blood stream.

He was officially taken off isolation for Influenza A yesterday. What a difference to see the entire face of the staff here instead of just their eyes, ears, and hair--the only parts that were visible with a mask on. We got to change rooms to a positive pressure room which is closer to things. I lost my private bathroom though. But Ray gets to take walks in the halls now. And he is the one putting on the yellow gown, mask and gloves instead of the care-givers.

Ray looks and seems to feel a lot better. He is quite weak but his spirits are up (as you can tell from his blog.) He was a lot more patient with the events of this week than I was. I guess that's why it's good to have two in a marriage--one can be sane when the other one isn't.

Our love goes out to all of you as you participate in our journey. May you receive the blessings you need and deserve.