Monday, 14 October 2013

Birmingham - Day 17 - Ward.

I left Evan fast asleep last night somewhere around 1, and went back to the room knowing full well I wouldn't sleep, I tried reading but kept thinking of the x-ray in the morning, so after putting on a load of washing, I was back on the ward for 3:30 and he has slept through.
Well until now, 6:40, he's just had his x-ray, so we just have to wait...
And it has been a long day since then..
The x-ray came back, the pocket of fluid on his left lung has got smaller, which is brilliant news, but they maybe are possibly thinking of doing a CT Scan just to be sure, but the CT Scan may not show anything additional to the x-ray in fact it might show less, and there maybe around a two day waiting list before it could be done, and they way wait until after the scan before they take the other drain out, and it always seems to be somebody else's decision.
With so many variables, and very little sleep 'Robert' appears back on the ward, and with the support of both the Belfast & Birmingham Cardiac liaison nurses and a call to Birmingham from Evan's Cardiac Consultant at home, things start to fall into place. (if you are a parent coming to Birmingham get to know your liaison nurses they are an invaluable support.)
We now have a plan in place working towards getting him a break in his TPN cycle up until now he has been on a continuous 24hr a day cycle. Blood has been taken to check liver function.
A Cardiac Consultant has taken a sonagram of his heart and all looks good as far as the heart surgery has went.
The Cardiac Surgeon who preformed the life saving operation on my son, and I am under no illusion that is exactly what he and his team did, has come up with three options to get us home, taking Evan's lung situation into consideration -
1- the drain stays in and we fly home.
2- remove the drain monitor the situation for a few days then fly home.
3- remove the drain and explore the option of coming home by boat.
So I am alot more content now that again we know there are more definite plans. He had just left the cot two minutes when they came and removed the drain, and with my limited medical knowledge I think that rules option 1 out ;-)
He has been for another x-ray tonight to make sure removing the drain went ok.
Back home my Dad has been clearing up leaves and branches in the back yard and he turned to Freya and said 'my back's sore' to which came the sympathetic reply 'if your back's sore what do you think mine is!'
Sitting here tonight I'm alot more content than I was 24hrs ago, and thanks for keeping Evan in your thoughts & prayers.

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