Nineteen Weeks and More

Musical Hospitals

Amazing How Time Flies

When I realized that it was August 22 when I last posted, I was shocked. I knew it had been a while but I didn't think it had been that long. Sorry to any of you who were trying to keep updated.

We are presently on the bone marrow transplant floor in LDS hospital in room E851. No, we have not been here since August 6. We have played "musical hospitals" though. It's been a challenge to keep up with where Ray is located from day to day--kind of like a Where's Waldo? book. I have not been very good about keeping up with the exact dates but let me see if I can give you an overview.

As Ray continued to gain his strength back in Aug, we decided the best thing for him would be a rehabilitation center that could concentrate on physical therapy to help him get more strength back so he could return home. Due to his rapid progress he was overqualified for the acute rehab center we wanted to send him to. Then, due to insurance issues he was not accepted to our 2nd choice. They finally found an Long Term Acute Care (LTAC) center that the insurance would accept.

The Move

So on Wed, Aug 31, Ray transferred to Promise LTAC which was located in Salt Lake Regional Hospital--the old Holy Cross hospital located on South Temple and 10th East. They still have the original chapel with gorgeous stained glass windows that was built in the early 1900's. His room had a huge window with a southern view over the Salt Lake Valley. Sunsets were stunning and it was interesting to watch the lightening and cloud formations when storms traveled across the valley.

The LTAC was in the process of moving to a new facility and on Wed, September 14, they moved Ray to their new facility located on the 4th floor at LDS hospital. This was very confusing since the care center wasn't affiliated with IHC. They were just renting space from the LDS hospital. But it made it convenient for visiting doctors. It was a beautiful new facility with large rooms. But I was disappointed in the quality of care. Being a nurse makes it hard to put up with sub-standard care.

Even though we were hoping that Ray's strength would improve, it seemed to do just the opposite. Within two-and-a-half weeks he was so weak and ill that we thought for sure he would be leaving us soon. After his visit with Ray Friday, Sept 16, my brother-in-law remarked Ray wouldn't be around much longer without divine intervention. I know of several people who fasted that Sunday in Ray's behalf. On Monday he had a scope. I was extremely concerned that the prep for the scope would be too much for him to handle. And it would have been if it hadn't been for me insisting on getting certain labs back before the procedure and the quick intervention measures taken by our friends at the bone marrow clinic. They sent him back to the LTAC, but at Wednesday's BMT clinic appt., I put my foot down and they transferred him back to BMT floor at LDS hospital (East 8). That was move #4.

He's Back

So again he received another "tune up." Over the next few days they gave him several units of blood and platelets, adjusted his meds, and re-balanced his electrolytes. Because of the vigilant care of the doctors and nurses, his familiarity with his surroundings, the love and compassion of his care givers, and, I'm sure, the numerous prayers in his behalf from all of you, within a few days he was like a new person. It was hard to believe he had been so deathly ill just a few day before.

We weren't eager to move anywhere else for the next while hoping to give his body time to really recuperate so he could come home. But within 8 days he had regained so much strength and was doing so well that we decided to check into getting him into the acute rehab program at IMC so he could learn to do stairs and get a little more cognitive stimulation.

On the Road Again

They accepted Ray at IMC rehab, so Tues, Oct 4th we made move #5 to the beautiful new Intermountain Medical Center on 5300 South and 300 West. They had him on the 12th floor--another large room with a big window facing West with a great view of the Oquirrh mountains and gorgeous sunsets. They started therapy on Wed and when I went to see him that night I could already tell he was improving. He had good conversations with people and he was able to walk further and do more things for himself each day. The only problem was that his appetite was worsening. Each day he would eat a little less and by Sat night he had stopped eating. Sun night and Mon morning he started with pretty intense diarrhea, so when I showed up to Mon afternoon to accompany him to his BMT clinic visit, rehab strongly hinted that he probably would be staying at LDS hospital after his clinic visit.

So he was admitted to LDS hospital Mon, Oct 10 and that's where we are today. He has been in a hospital or care center for the last 10 weeks. This makes his longest hospital stay since his bone marrow transplant last January, which lasted 6 weeks.

Transplant Updates

Today marks 270 days since transplant. Ray continues to hang in there even though it's a day to day process. They continue to say the transplant was a success as Ray continues to be cancer free. But he's faced many hurdles. The doctors and PAs alike say that most people don't survive all the hurdles Ray has been through and then add, "but Ray keeps coming back." They've told us that so far everything that's a problem right now is not a deal breaker, but feel that if one of his problems worsens or he has one more set back it probably do him in. They say as long as he wants to fight, they're still in it with him.

He continues to have signs of GVHD with possible liver and eye involvement. The CMV was all over his gut three weeks ago. The fungal infection in his lungs continues to wax and wain from week to week. They finally got him down to low dose steroids hoping that his immune system will help a little in the fight against the fungal and viral infections.

He is still extremely weak, staying in bed and sleeping most of the day. He fell on this morning's journey to the bathroom because his legs just gave out. His blood counts continue to be low most likely due to the strong medications needed to keep the infections in check. He has days where he get confused or his short-term memory is shot. Nausea now seems to be around more.

His attitude is wonderful. He continues to say he's fine almost every time someone asks him how he is. He doesn't complain of much and is usually willing to try to do whatever his care givers ask. When I ask him how he is, he replies, "I'm doing fine, really."

The Rollercoaster

So we continue on this roller coaster ride. A while back I was hoping that the ride would end and Ray and I could get off so everything could calm down. But it seems that is not going to be the case yet. So we'll make sure our seat belts are still fastened and keep on keeping on.

Thanks again to you all for your love and prayers. We have felt your strength throughout our journey. We wish the best to you and your family.

We send you our love,

Ray and Chris