Big News: Kay's donor has agreed to provide a top-up transplant! Wow! Fantastic! Our gratitude knows no bounds, if it ever did. The procedure will probably occur in the week of 9th August. Another big week, as if we haven't already had our fair share.
More Big News: Assuming everything remains stable Kay will be allowed to go home on Sunday & Monday so that she can wake up in her own bed on her 10th birthday. Fingers crossed that everything remains good enough. Big hug to Leonie, who has fixed this up.
Further News: Her blood counts bounced back yesterday, white cell count back to 0.4. Bl**dy Hell! This excursion has resulted in us burning ourselves up all weekend. No real explaination from the medics, could be a natural fluctuation since 0.4 is next to nothing anyway. One of my favourite comedians, Mike Harding (you have to be Mancunian), once desribed one of his teachers as the sort of person who would tell you on Friday that he was going to strap you on Monday. This is exactly what this little escapade feels like now. Jeez.
In spite of all this Kay is mentally very low. She has developed chest pain around her line in addition to the bladder/peeing pain. There's no externally visible indication of what this could be, no sign of infection. But the surgeon will come and take a look at her later today. The added pain from the line has increased Kay's misery and she finds it all too much. She requires quite a lot of of support at the moment. She's also taken to sleeping a lot (again), but I suspect that that may be due to her red cell count being low. She will get a transfusion later today.
Right now (in between me writing this...) she's screaming with pain when she pees. She's just been given painkillers and is now trying to sleep. Poor thing, all this pain is so difficult for her. I keep telling her that pain is pain and doesn't mean that there's anything seriously wrong, but that's a message I'd have trouble believing in her state.
Oh and by-the-way, I started to ask her whether she wanted a main birthday present for use in her room or for when she got home and she damned well guessed what I'd got in mind - a mountain bike. Child is so damned perceptive, it's impossible to get anything past her.
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Finally some good news. Let's hope everything turns out to be ok in the weekend and on Monday. Fingers crossed. Laci (Posta) and the familly
ReplyDeleteBrilliant news on the result front, fingers crossed you are turning the corner and I do hope that they can sort out the pain for Kay soon.
ReplyDeleteIncidently what did she opt for, present for home or her room now?
Love to you all
Happy Birthday Kay for Monday
Sharon x
Hey Kay, cheer up! It's nearly your birthday!!!!!!! Yipppeee!!!!! I got a Paddington Bear for my birthday when I was your age... what do you think you would like?
ReplyDeleteUncle Dominic and I are going to be practicing our Chinese cookery this weekend ... if you're really lucky we just might be able to cook you something really special by the time we see you next. We have agreed that I won't try to stuff the Chinese buns with baked beans this time ... they were a disaster ... even the ducks refused to eat them!
We are busy looking for a new house and a new puppy! Uncle Dominic will send you some pictures of the dog we hope to get. It's called a "Groodle" and is really a very big teddy bear pretending to be a dog.
I will be thinking of you having a lovely birthday this weekend. Give Granny and Grandpa a big hug from us.
Lots of love,
Aunty Ali & Uncle Dom