I’m still not sure why Meal Train often puts the date as one day later, but I am writing this on Thursday, February 4th. Today is Day +7. Kendall is feeling very wiped out, but that is to be expected at this point. The doctor explained to us this morning that Days +7 to between Days +10 and +14 are typically the worst for how a patient feels post-transplant (assuming there aren’t future complications). Kendall’s numbers are at rock bottom (i.e. white blood cells, platelets, etc.), but they expect them to start climbing in about a week. He’s been getting a lot of platelet transfusions, and he is on MANY drugs including an anti-rejection medication. Kendall hasn’t had a fever now in a few days, which is a great sign. They are not sure if his rash is a drug reaction or graft vs. host, but other than looking unsightly it really isn’t bothering him too much.
In the meantime, things are busy here at home trying to get ready for when Kendall will come home. EVERYTHING is getting deeply cleaned, and has to be done in a domino fashion (carpets after the full house cleaning and disinfecting, which is after the ducts are cleaned, which is after the new furnace is installed…you get the idea). We’re getting the new furnace installed tomorrow (ours was more than 20 years old and was starting to have some problems). It will include an ultraviolet germicidal light system as well as top of the line air filters and a humidifying system that should make it easier to breathe. We’re determined to have our environment here be as sanitary as possible for this next phase.
I’ve also been thinking lately about some of the things I’ve learned over the past five and a half months. Sorry, these aren’t deep or profound thoughts here tonight. I now know more about things like power of attorney and advanced directives than I frankly ever wanted to. I certainly know a lot more about transplants and different medical abbreviations and jargon than I used to. Then there are silly things like which bathrooms (and stalls, and sinks, and paper towel dispensers – seriously, they are not all equal) or water fountains are the “best” at the hospital, or the little happiness jolt I get when my “favorite” parking spot is available. I know the best places in the hospital to go on walks and get the maximum amount of steps (definitely the second floor, going between the infusion lab then down across the hospital and sky bridge to the labs at 2E). I know the best route and times of day to drive to and from the hospital. I know which vending machine is awful for eating your money or getting stuck.
I also know which fast food places are within easy driving distance of the hospital (and require the least number of left turns) and which will do curbside delivery. It’s funny. We have always been quite frugal and really didn’t eat out often before all of this happened. We’ve really relied on it these past months, though. A huge thank you to those who have sent us Grub Hub or Door Dash gift cards. They have made things like a run for that spicy chicken sandwich and chocolate frosty possible, as well as a few “car dates” that let us take a short break from the hospital on some of those really long days. I’ve always been a brown bag lunch kind of girl, but that has been difficult to maintain day in and day out. There were many mornings we had to leave before 6:00 a.m. (once as early as 4:20), and we might be gone all day. If we had gotten home late the night before and then just collapsed in bed, I wouldn’t even think about packing lunches. Kendall has a lot of food restrictions and rules about how long something can be at room temperature, etc. He isn’t supposed to eat fresh fruit or vegetables (so easy things like carrot sticks have been out), or things like lunch meat and even some nuts are a no (I had to take a class just on the nutrition, and I have 10 pages of food restrictions – I’ll have to post another time about some of the additional preparation restrictions there will be for the next 6+ months). Plus he has struggled a lot with nausea, so it’s hard to predict what he will be able to eat and keep down. So seriously, those gift cards were really a lifesaver.
I can tell I’m starting to ramble as it gets later. This has understandably been an emotionally exhausting week. A lot of ups and downs. But still we carry on, taking one day at a time. Isn’t this sunset gorgeous? This was my view as I was leaving the hospital the other evening. Night!
