Wow, what a difference a day makes. When I called John up Saturday morning, the day after the transplant, he told me he had showered and eaten. His voice sounded so energized and full of life. He sounded almost like a different person than the day before. I rushed over to the hospital, because he said the doctor would be in shortly to talk with us. I was very surprised when I walked in to see him sitting up in the recliner reading a newspaper! Yes, they said he would be weak and resting for several months, but he was doing so much better than the day before.
I looked at the chart to check out his counts (his labwork). His white blood count (WBC) was only 0.3. John said the nurse had told him he was "severely neutropenic". She also said the white cell count would fall even lower over the next few days. Then it will probably start coming up in 10 days to 2 weeks.
Being severely neutropenic means John can catch an infection at any time. That is why he has to wear the mask all the time, except in the day hospital. The nurses ended up telling him he ought to wear the mask at Hope Lodge also, until his white count comes up, which should be about two weeks.
Anyway, John was doing so fantastic, that they discharged him from the hospital on Saturday! He was able to leave, and he had lots of energy and a lot of color to his face. They almost didn't discharge him, because of an insurance issue (where the insurance co. is denying him two meds that they promised they would pay), but the docs decided to let John out, and try to deal with the med/insurance issue on Monday. I hope it gets dealt with, or John might be readmitted to the hospital on Monday again, because he won't have his medication.
Now that was the up day. Today (Sunday) was the down day. John woke up exhausted. The color in his face was gone and he was extremely fatigued. We went to "day hospital" and they did some labwork. The found out his WBC was 0.2. His red blood cell count was pretty low, and his platelets were extremely low. So he had to have a platelet transfusion.
He was concerned about having the transfusion because he thought he would have the shaking reaction again but they gave him a large dose of benadryl, and he breezed through his first ever transfusion.
We were at day hospital from 10 am till 2:20 pm. When he got back to Hope Lodge, he ate a peanut butter and jelly sandwich and some fruit cocktail. Then he went back to bed just about for the rest of the day, except to occasionally watch TV. I got him up to take his meds occasionally and take his temp (which must be done four times a day). And at 6 PM I tried to make him eat but he refused. So I made him a milk shake with Ensure in it. I am sneaky. To get him nutrients I mixed Ensure in with the ice cream! And blended it up. He loved it. Not that sneaky, I told him what I did, lol, before he drank it. But that is all he would have for dinner. He refused to eat. The doctor says that if he does not eat enough he will have to go on a glucose IV instead of eating.
How am I doing? I am having little spasms in my legs from sitting too long in the hospital rooms. I can't go too far for walks because I can't leave his side. I am afraid that my legs will spasm into charley horses any day now, which is SO painful, and has happened before. I just don't want it to happen while I am driving, and wreck or something. This is something silly to pray for, but please pray for my legs. Thanks.
How else am I doing? Holding up great. Doing a lot of work for John. And emotionally fine. It is nice to have him home from the hospital so we can have time together.
Well, I am extremely tired now. And John and I have to get up at 6:30 am to be at "day hospital" on time tomorrow. So I had better get off. I love each of you.