Lovebuch family happenings

Haven’t been able to write until today because today is my first afternoon off since I got out of the hospital. I have been going to the clinic (regular SCCA appts in South Lake Union) every morning--including weekends--around 10 am, receiving a blood draw and then waiting for counts to come back to see what blood products I need that day. I see the Blue team once a week, but many days I wait for the triage nurse to tell me my counts. If I need platelets or red blood cells, they then set up an appointment, usually around 2-3pm. This gives me an awkward 2-3 hours. Not really enough time to come home, but a lot of time to sit around the clinic. Once I went out to eat nearby, but usually I just eat in the clinic and then wait it out. Once I reach my appt time, I go to a room and the platelet bag (i usually just need platelets) is called to the floor. Then brought in and hooked up to my Hickman. From there it’s two more hours before the bag is done and then a flush, and then a 20 min wait

Friday marked 4 weeks in the hospital, so if I leave tomorrow it will be 31 days, so pretty accurate to say a month. This is the longest I’ve ever stayed in the hospital. Shoot, the longest had fresh air, seen Alpen, touched a real plant, the list goes on. Long story short, I’m ready to bust out of here. The days since the last post have just kinda cruised by. Doing my hourly self care of eye drops and chapstick, trying to get my protein at every possible instance, slowly taking my morning pills. Many nights have been long disruptions of IV medicine and blood products. But thankfully, last night, I didn’t need any blood products and all my IV meds have been switched to pills so I had 4 hour chunks of uninterrupted sleep. It felt good. Yet, I’m still tired. Probably fatigued is the right word. Been fun with visitors over this weekend. Zach and Erin came on a night away from the kids to bring me food and hang out! We facetimed with Greg and Hillary to watch the dunk contest. What frien

Been a bit crazy around here last 4 days. To begin, after the great news of 10 neutrophils (I like to call them neuts) the next day they didn’t see any. So back down to 0. But then yesterday they came back to 20. And today, 20 again. Dr Becker said “thus starts the long slow engraftment of a single cord-blood transplant.”  Maybe this is what they meant when they said it takes longer to engraft. Cells come in early, but then it just takes awhile to get to 1000 and out of immunosuppressed threshold. We’ll see I guess. Healthy humans have neutrophil levels in the 1.75k-7k range. More when fighting an infection and less when you’re just hanging out healthy OK more on the story of the neuts later. I got to get to bed and it’s hard read what I type with my left eye in its current state of healing from Proton Therapy. Alpen during a FaceTime session.

Time is passing rather quickly still which is good.  Many of the days are the same, but there is always one new symptom that creeps up that we have to deal with. Then it’s fixed or just goes away the next day. However, it seems as soon as we fix one problem, another one emerges.  Take my feet burning as an example. The feet no longer burn as bad. So yay! We switched over to oral cyclosporine and that was a fix. More of a temporary fix though, because in classic hospital fashion, we started IV magnesium-- and it caused the same flushing and burning! So feet burning again.  We slowed it down and that helped. But a night dose had my feet on fire and couldn’t sleep. I ended up having to take 10mg oxycodone which I don’t like taking--too much nausea and constipation. It did the trick though and the pain went away and I could get some sleep. But because I had to go with narcotics I woke up with what I call an opioid hangover and felt nauseous and block headed.  This slows down the morning: