September 26th, 2016 (Day +3)
A quiet night was not to be. Around 11 pm Jess started running a fever and this continued to climb over the next hour. Cardinal rule of being an SCT out-patient is any temp above 38 degrees for more than an hour is to be reported. So we reported and, at 12:30 am, we were on our way to the hospital. The term “out-patient” is actually a misnomer. She is not really an “out-patient” she is simply out of the hospital building; part of the program means that they have a bed available for her on the unit at all times, just in case (even if it’s in the SCT day clinic area, until they can get her on the unit). And she doesn’t go in through Emerg she goes directly to the unit (5 west).
Upon arrival, she was started on an IV antibiotic (Pip/Tazo), and given IV fluids. Blood was also drawn for cultures. I left her there at about 2 am, knowing she was in good hands.
September 27th, 2016 (Day +4)
Jess had a chest x-ray, was given blood and platelets. They’ve inserted a feeding tube until the mucositis clears enough so as to allow her to eat and drink freely. She needs to be an in-patient because of the feeding tube and the IV antibiotics. The impression is that she will be in until the stem cells begin to engraft (at which time the mucositis should begin to clear up), probably a couple of weeks.
September 28th, 2016 (Day +5)
“I’m takin’ the roll of paper towels for a spin…”
Jess is settled now in the room that will be home for the next couple of weeks. A pain doctor was in to see her today (I’m getting the impression the mucositis is not normally as painful as Jess is finding it) and she will be started on a pump because, even with the fentanyl patch and the IV dilaudid, she still has pain and isn’t able to focus on much else (TV, e-reader, card games, etc). We expect this will be the status quo for the next couple of weeks. All the pain meds are making her very drowsy (and quite comical at times .. hence the title of this particular post).
It should be noted that later Jess may
clean up correct some of what I post because, while she is proofreading before I post, let us just say that she may not have all her faculties all of the time. That is, I had to wake her up mid (her) sentence to tell me what she wanted edited. It went like this “Jess, Jess … ya sorry mom what were you saying? No Jess ..what were YOU saying?”