So, after sodall sleep on Monday night, yesterday we headed off in to the BHOC at 9 for the appointment at the Brachytheatre at 9.30, for Kai to be measured for his TBI (total body irradiation). Estimated time was half an hour, but it only took five mins, then we headed up to the day unit for review and admission (that was scheduled for 10.45, so Kai had a book ready...)
We arrive at 9.45, to have Hilary (one of the senior nurses in charge of the day unit) usher us into one of the consultation rooms, saying, "I've just tried to ring you - the anaesthetist was here at 8 am looking for you...")
Uh, what...?
Turns out we should have been told that Kai was due to have his PICC line put in early in the morning. (Except he has to have platelets before anything like that and yet again the platelets weren't ready, the lab claiming again that they hadn't got the bloody standing order for them that the BHOC doctors keep ordering, and they wouldn't be ready until midday at the earliest and more likely later. I can see I'm going to have to make another official complaint. Like I need the hassle.)
I pointed out we'd had nothing from the transplant team to let us know the schedule. Nothing at all. We should have had a letter - or at least an email - with all the details.
Turns out the transplant team coordinator's father was suddenly taken ill and he apparently just up and left and flew back to India without fucking handing over to anyone. Which, as the consultant in charge of Kai's case said, was completely unacceptable.
Damn right it is!
So, all in all a great bloody start.
At least his room was ready and is quite pleasant, with a nice view (even better one from the vestibule, out over the city and out to Dundry and Kingsdown). So we got him settled, he finally got his platelets at 4 pm, then went straight down to have the PICC inserted (I went with him, it was quicker and easier than the first time, but then we knew what to expect), then it was back up to his room and dinner (sausage hotpot with chips and green beans - nice big portion, smelt great and Kai said it was very tasty, so at least I know he had a decent meal last night).
They hooked him up to a hydration fluid all last night (eight hours) which meant he didn't sleep very well, and apparently the lab are several hours late with his first batch of chemo this morning. That's less urgent, as there's some leeway now he's actually been admitted. Still annoying though.
However, we now have the schedule, and it is, as one of the doctor's called it, pretty brutal. But we feel fairly positive about it all, and Kai said he's just going to fight all the way. But he wants me there as much as I can be, so my time here will be a bit hit and miss for a while. I'll report back when I can.
The actual transplant will be on the 2nd. Your positive thoughts and 'fluences are still most welcome: quantum entanglement is random but things do get through...
Labels: AAARRGGHH, Kai, medical matters
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Joules *Dances with Haddock* Taylor
pontificated this at 11:41 am
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