Never Ending Hospital Visits

Here Ray is now at Day 57 Post Transplant & by now he should have been down to only once a week visits at the hospital for weekly labs. Last week we started feeling like that was finally getting closer to happening when they told Ray he only needed to come Monday, Wednesday, & Friday. Guess that wasn't meant to be because  wouldn't you know that the very first morning we weren't scheduled to go, we received a phone call telling us a blood culture identified bacteria & they wanted him back so they could start him on antibiotics via an IV. That was suppose to happen every day for several days but when we returned for the second day of that IV & he was hooked up to it & only ten minutes into it, the nurse came flying in to shut it down because the blood results that morning showed that the antibiotic was having negative effects on his kidneys! After they did another culture, the results did not show the bacteria any longer so they believe it was just in one of the catheter lines & it was resolved.

Sadly though we are still making daily trips to the hospital because now his kidney levels remain high so they are watching it closely. They changed some meds around that require one of them to be giving intravenously now & because of the effects on ones kidneys, they also want to give him extra fluids to keep them flushed. Anyhow, we are averaging 4 to 5 hours daily at the hospital now at least through this Wednesday at which time they will re-evaluate Ray's status & decide where to go from there.

I have kept Ray off of lactose products now for a couple of weeks & it did seem to help a little but not nearly enough because he's still having stomach issues so I'm leaning toward thinking it's something else causing his problems. But being on so many medicines, it's very difficult to pin-point which med it might be. I'll re-introduce regular dairy products in another week & see what happens. I'm hoping it doesn't make matters worse. Poor guy is already nervous when leaving the house for fear he'll be caught out somewhere that he can't get to a restroom in time.

Oh & that rash problem Ray had that we thought was getting better - well it did seem to for a bit but not anymore. It is spreading on down his legs now. We keep treating it with special prescription creams but it doesn't stop it from spreading. It's kind of strange because part of it heals & the skin peels off, yet the rash continues to reach further & further outward. They tell us it's a result of the chemo & we have to wonder how long the rash will continue.

It's a good thing that there's nowhere we need to be or anything we have to do or be responsible for now, allowing us to deal with all this. When the doctor tells us to come, we can come. When they tell us that instead of the 15 or 20 minute hospital visit we were expecting, we now need to stay 3 hours or more, we can just say "ok". Today while Ray was getting his infusions I was able to take the car to get the oil changed & tires rotated & run some other needed errands. 

Early on in this journey when we were learning of what to expect, we were 'talking the talk' as we tried to explain it to others. That was easy. But now we are certainly 'walking the walk' which is quite a bit harder & we'll keep on as long as it takes to beat this thing! Ray handles is much better than I would if I were in his shoes. He is amazing.