It's been a long few days.
This past Friday, on Day +24, Jason was discharged from the hospital. It was an emotional day and made for a very busy weekend.
On top of Jason coming home late Friday night, he also wanted to take the time to see family at the weekend Easter party. It was a great weekend and he even got to meet his new nephew. Now we are trying to rest and play catch up.
Since coming home there have been a few challenges. Jason's kidney function tests were not so fantastic the last time they were checked. I basically forced him to drink as much fluid as possible to help them. On Tuesday we had a doctor's appointment and they said that his kidney function is doing better. Apparently the fluids are helping.
Then, he needed to go on lots of walks for two reasons: his platelet count is in the millions (you read that right), and his lungs were filling with fluid periodically and he had a lung infection. With millions of platelets Jason is at risk for blood clots so the walking helps that problem. However, if his platelets do not start to slightly decrease he could be susceptible to bleeding. It is strange but when your body has too many platelets they can actually work as though you have too few platelets and then be at risk for bleeding. On Tuesday's appointment the doctor said that Jason's lungs were sounding better and better.
The past two nights were a lot better than the first nights. Neither of us got any sleep since Jason had constant low-grade fevers throughout the nights. His discomfort and sweating was tough to handle and if the fevers were to have gotten any higher then he would have had to be readmitted to the hospital. This is not uncommon but wouldn't have been welcomed after we had just returned home.
On Tuesday's appointment we discovered that the CMV virus in his stomach is decreasing so he will continue to be on that anti-viral medication with no changes to the dosage. His Tacrolimus level is not too high, and he is feeling OK overall.
It will be an interesting few weeks and months and year. The atmosphere at home is a little stressful because symptoms usually arise from seemingly nowhere. The past few days he wakes up needing to vomit some clear fluids but the rest of the day is semi-uneventful.
For now we have been warned repeatedly to avoid all crowds, any sick, any exposed to the sick. I am to clean the house with disinfectant often. Usually I wipe the counters, doorknobs, light switches, faucets, sinks, remote controls, phones, steering wheel, etc. Plus, I do the laundry in small loads to avoid any dirty clothes floating around. Pillowcases and sheets are changed daily (no, I did not change them every single day before this, I am not THAT impressive). And there are many changes to the foods we eat and how they are prepared. But overall we are doing well.
We do not have any results from the bone marrow biopsy that was performed last week but we are hoping that when we hear news it will be good news, that Aaron's marrow is producing and just taking its three months to a year to slowly take over.
I have been trying to finish personal projects but I have mostly been helping Jason, which was expected of me since the beginning. I was told that, as caretaker, I would be with him while he was in the hospital, and at least the first month home.
At this stage in the game Jason's biggest "problems" have been that he doesn't like the high volume of medications he has to take (it's a lot). And he feels weak when he walks for a little while but that has been getting better with every walk he takes (we take three walks per day, about 1/4 mile each). He also deeply misses his hair and beard and often wears Winter hats because his head is very cold. I have never heard him complain about being cold but this past week he has constantly needed heat sources and blankets. I have no problem with heat so I am enjoying this time that appreciates it because I know that soon he will want the A/C and then I will be living outside. Lastly, he finds it hard to sleep at night so he has to take numerous naps throughout the day to make up for the sleeplessness which he attributes to the medications.
Hopefully things will continue to go this smoothly in the future. We continue to pray and hope that this be our new beginning.
