First of all thank you for all your kind messages.
Well she's still here thank goodness but not through her choice, let me explain.
They tested her sats again by turning off her NIPPY, thats the machine that breaths for her. Last time a few months ago she would have died within minutes but this time there was some evidence that her body was trying to cope, much to every ones surprise but she could not survive with the machine to breath for her.
So now the doctor's have said they wont switch the NIPPY off as she will struggle for a few minutes before passing away.
Now they are planning to go ahead with trying to tweak her pain relief but she has no faith in that as nothing has been working for years.
This has left her feeling more confused and up set as she has more than accepted the end and one she has control over, something she had thought was the one thing she could decide. That has now been taken away from her and she is very upset about having to wait for her heart to give up and being awake for that. Facing that, which they say is weeks or a couple of months at best and having no control must be the scariest thing ever. I really feel for the more girl who up till now has been so brave and strong.
On the plus side those that love her can heave a sigh of relief for the time being even if its for our own selfish reasons. Lets face it none of us wants to lose a love one no matter how bad living is for them.
Again thanks for all the kind and loving support and I will keep you posted.