Reece has been making good improvements over the last couple of days. He is on a regular flow nasal cannula, sitting just above room air as far as his flow. He has been without fevers for the last day or so. We have been out walking and doing wagon rides, which is helpful, but his activity level needs to increase to help out his whole body’s functioning.
Yesterday, the nurses noticed that he had an irregularity in his heartbeat. They see this often in kids; they monitored his heart all day and did an EKG to check things out. The doctors were not concerned, but will monitor it every so often to make sure is not increasing in frequency. It is likely due to the amount of drugs he is taking right now. A doctor who happens to specialize in that area was the nighttime doctor last night, which worked out perfectly for a consultation. She said based on where the irregularity happens in regard to his heartbeat pattern, she is not concerned. She had the leads taken off for monitoring. All I can say is…good.
Reece has been dealing with a flare up of his skin GVHD. They increased his dose of steroids so he is back to receiving them twice a day. As it did the first time he was put on the steroids at twice a day, it is messing with his sleeping habits. His evening steroids make him wakeful at night, which then makes him nap throughout the day. His rash seems to be holding steady–we need to see improvement. There is still some wiggle room to increase the dose, but we don’t want to go there. If the rash does not subside, the last resort would be to wipe out his T-cells, which would make him even more immunosuppressed–leading to even more vulnerability to infections. Additionally, his T-cells are showing 100% donor, so we don’t want to have to wipe out any donor cells if we don’t have to.
One other interesting tidbit of info we learned this week is that according to his latest blood engraftment study, his blood composition still pretty split between the two cords. It is more uncommon the farther we get out of transplant for one cord not to start dominating. We’ll see what happens…he’s still 100% donor, though!
It would be awesome if the rash became controlled, the oxygen could be weaned off completely, and the fevers would stay away. We would actually have passes to go home intermittently throughout the day as a way to get ready for the d-word. It would be such an encouragement for him to be able to get out of here for a few hours. It’s a good goal to have in mind.
- Praise for continued improvements in breathing and no further bleeding
- Praise for a reduction in fevers
- Continue to improve in breathing; to wean completely off oxygen
- Protection from further bleeds and side effects of transplant
- Improvement of GVHD rash; no need for immunosuppressive drugs; no further flare ups
- Protection from chronic GVHD
- Protection from infections and fevers
- Improvement in blood sugar regulation and weaning off insulin (corresponding to steroids)
- Improvement in regulating weight
- Remission and life
- Home visits and the d-word (I refuse to spell it out anymore.)
Best to all of you and thank-you!