Wow -- today had its share of ups and downs. It started off really good; Doug told me that before I got there he had pancakes for breakfast! First solid food in days. And his neutrophil count is up to 588! His mouth sores are quite a bit better but still has a sore throat.
Doug got another transfusion of platelets last night. He had a temp of 102 late last night but by the time I got there this morning it was 99.4. He is still on oxygen.
The occupational therapist came in this morning and showed Doug how to do some exercises using a Theraband - a big rubber band. Some he can do in bed. She also showed him some lower extremity exercises to do standing up. With some encouragement he did those when he got up for a bathroom trip.
I went to a "Caregiver Support Group" this morning. There were five of us and a social worker. We all passed around the box of tissues. Everyone agreed that even though we were informed and had lots of educational material, we had no idea of the extent of the difficulty we would face. One lady said a doctor told her that a stem cell transplant is "the most complex medical procedure there is". I don't know if that is correct or not, but I know it is a brutal treatment; however we don't have a lot of options. What our doc told us in the beginning was that half of SCT patients have fevers, and one quarter of those who start out as outpatients like us end up being hospitalized. We both thought that since Doug started out in great physical shape that he would be one of the lucky ones, but not so.
The infectious disease specialist came to see Doug and his rash -- he said that if Doug is still having the fevers in another day or two, even with the improved blood counts, that a CT scan might be needed to try to find the reason.
Even though Doug is so very fatigued, he got up and sat in the chair for 30 minutes - that was a huge effort. And he even ate a few bites of chicken noodle soup!
The doctor of the day came to see Doug and he said that Doug's sodium level is low. That is a concern for the kidneys, and he ordered a urine test so he can compare the blood sodium against the sodium in the urine. If they can't figure out where the sodium is maybe leaking, they will call in a kidney specialist. This really worries me. We had a friend who had a really bad time with lots of complications in the hospital and it all started with low blood sodium.
Doug spiked a temp of 101.6 in the afternoon, so he got Tylenol. One hour later his temp had risen to 102.1, so the Tylenol didn't help. Not good at all. He got ice packs.
He was having what he calls "hallucinations" more often today -- he was saying some really weird things.
At 4:00 this afternoon he took a walk that was twice the distance he went yesterday! Very good effort - I was so proud of him.
I am very concerned because of the continuing fevers and now possible kidney problems. I hope that comes to nothing. You can see why I called it a rollercoaster day -- highs and lows.
Today was one of the days that I had to pray for help to drive home safely. I now keep a big box of Kleenex in the car.
Love to all, and keep praying.
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