Tuesday, 15 October 2013

Birmingham - Day 16 - Patient patients

This is only posted now we are back in Belfast.
Monday morning's round of consultants was all go, Evan's ok to go back to Belfast, plane tonight, bed arranged in Clarke Clinic in the Royal... need to pack... don't tell anybody back home... just incase... organising milk & PN... the thought of seeing Freya.
Then a Doctor appeared at the end of the cot "we've been a bit naughty, we told you, you were going home, we'll your not, the consultant has reviewed this mornings x-ray and compared it to earlier ones and there maybe a slight increase if fluid on the other lung, so we'll keep you here for a few more days."
I know its the right thing to do medical, and I want the best for my son, but why tell parents you are going home before the decision has really been taken. Jenny was back in Ronald McDonald packing, when I was told.
As I said in the post I was grateful that the surgeon would clear a space on her list should it become necessary, but I pray to God that it won't.
Today just seems like a re-run of last week, Evan fine on the Monday, but the difference is last Monday we didn't know the fluid was increasing on his right lung, and the delay in the x-ray lead to the situation we ended up in, today the increase may be on his left lung.
The cause is a build up of fluid in his body after an operation which is normal, and it is normally treated by diuretics, but as we have told a number of doctors and nurses since arriving here, Evan doesn't react normally to diuretics, he has a short bowel, therefore he can't absorb the full dose, so why were the diuretics changed from IV to Oral? He has only one kidney which has to work harder to remove the fluid, when we tell people this why do they look at us in surprise, it is in his notes?
We were told last week the drain had solved "a problem" but not "the problem" maybe now somebody will look into solving "the problem". I've a few suggestions!

The delays we faced in Belfast were nothing compared to this, the thought and hopes of going home snatched away as uick as they were given! 
He has been sound asleep since about 10:30 tonight, and a good nights sleep will help with what tomorrow may bring, but I have stayed here like most nights, watching him sleep, giving his medicines or changing milk where I can, to ensure he gets as much sleep as possible.
And I may as well sit here with him, as the thought of my wee heart warrior going through a third operation in the last 16 days, doesn't bring sleep that easy.

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