To pick up where yesterday's entry stopped, Marion had a hell of a night with Kay. The transfusion of platelets was finished around 1:30am. Then the NG tube had to be refitted. Kay was extremely upset by this and the whole thing was something of a drama. When they finally settled down, Kay's bladder infection started playing up and she needed to pee every 15 mins for the following two hours. After that it slowed down to just every half hour. The result was a badly broken night.
The good news today is that the result of the DNA test on Kay's blood cells shows 90% are of donor origin. This means that she can get have a top-up transplant without the need for further conditioning. Phew. Also, her weight has increased again, soit looks like we're making progress on that front too. Now we just need to get this damned virus sorted out.
The antibody attack on the CMV virus was started this afternoon without further ado. But it will be (a) week(s) before know whether it's had any effect. Contrary to what I understood yesterday it seems that this treatment will be repeated once per week for the next six weeks.
Kay has been started on two new medications today, one for her apparent bladder infection and one to help her stomach digest food. I was curious so I counted how many medications she's getting on average and it's around 13 different drugs per day, some repeated twice per day and some three times. I wish that we could collect airmiles from the Pharmacy, we'd be able to take the entire family on a round the world trip by now.
I'm sat here, early Friday evening, feeling totally exhausted. My body is aching, my head is spinning and my mind clouded in fog. The recommendation has been made that I get some chemical help from my GP since it seems clear that I'm suffering from deep seated chronic fatigue. But I'm pretty drug resistant, so I'll have to discuss it with my GP.
Anyway, enough for now. I want to lie down and... and well I don't know what, I'm too tired to do anything and it's too early to sleep.
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Rob
ReplyDeleteThirteen medicines sounds like a logistics nightmare, never mind the stress on you all administering them.
If you need a bit of light relief, this made me smile today (although it's probably from before your time):
http://www.youtube.com/watch?v=WFyWS9WaqT0
Good wishes to you all.
Alistair (Sue and Emma)
We've been out of Internet contact for a few days and only discover this week's events on the way back to the 'real world'
ReplyDeleteI learn it's been tough for you, sorry to read that. It doesn't feel right to be telling you about our holiday but we are all doing fine. Even Isabelle, who is a year older today. Hugs to you all.