Update post op

Since the procedure last wed we have been waiting for two things:

a)his blood pressure to remain stable,
b)his chest to stop draining so much fluid which would indicate that the chyle production was reducing .

Initially the drainage reduced a lot but has crept back up a bit. His blood pressure has remained stable and the Doctors are content with that.
It seems likely that the hole which they enlarged in his heart has shrunk back a little - it is quite elastic tissue - which has meant that the initial large success has been brought back a little . The fluid retention is quite visible on him too, his eyelids are really puffy and his neck looks massively fat and floppy.
There is a fairly new drug available -levosimendan (simdax)- which is currently unlicensed for children that has been used a little in Australia for children with similar heart failure. It has been successful at helping the blood pressure and contractility of the heart. We were asked today for permission for it to be used on Theo and we readily agreed. We did not feel there was another option for him at this stage as he has reached stalemate again.

Other news - He has had a line put into his scalp today - we asked for the shaven hair to be saved for us and were presented with a pot of several hairs and a lot of dandruff. hmmm. he's under a heater day in day out so his skin is pretty dry as an excuse. a line basically is an access route for either taking blood or administering drugs.
He has been weaned off of morphine, now just paracetamol. Dopamine gone too. There is talk of removing the gonzo shape breathing equipment and replacing with delightful sounding nasal prongs.
I also tried to give him a dummy - normally wouldnt want to give one but as he has nothing else to suck I thought it might be nice for him and the nurses suggested there was evidence that it would help keep his mouth and jaw exercised. He liked it!!! he also has these lollipop shaped sponges on sticks that the nurses clean his mouth with and smear anti-thrush ointment that tastes of cherries around his mouth and he apparently sucks on these too. yummy!
I am getting quite brave and competent at doing some of his care routine. It might sound funny coming from a mum of 2 already but when all the wires and stuff are everywhere, even giving a bed bath and changing a nappy becomes terrifying.

please keep leaving messages - they mean a lot to us when we read them. x willow x and x colin x