Thank you all for your prayers, wishes and emails.
Jake's surgery went great. The usual ups and downs. His biggest problems now are that the skin around his neck is breaking down which means it's basically a big open sore that constantly weeps fluid. He looks like someone tried to hang him.
He has horrid veins and none left that werent blown or infiltrated so they are going to inset a pic line for him (A permanent line surgically implanted).
Normally these kids have plureul effusions (fluid in the cavity between the lungs and the "outside wall". Normally, these effusions are about 100 ML per day. Jake is effusing 1000 ML per day and yesterday they turned in Chylis, which means they are leaking fat like mad. So poor baby has to go on a NO FAT diet - not one miligram of fat. Hopefully this will close up the drain. The amount and kind tho means that we are probably looking at a several week stay.
The problem is one of gesalt - everything effects every other thing. His heavy chest drain means no fluid to his kidneys. They give his plasma so his kidneys wont shut down and he swells up in his extremeties. So vitamins, then dieuretics to flush the swelling which interferes with the chest draining, etc. A vicious circle.
The only analogy (if you havnt nodded off yet) is that they are giving him food and then making him throw it up and hoping that he got enough nutrition for those few minutes he could.
I guess I blocked it out but the Fontan kids always have an easily discipherable look. It says Fuuuuck You! My face wont talk to any of us at all. If you talk to him he will look at you and deliberatly look away. It's the only control he has over his life right now and sometimes my heart just breaks for him. Open neck wounds, a zipper chest, 2 chest drains, nasal canula and skin that looks as if we worked him over. There is not a vein site left without deep bruises.
I wasted all this time taking him fun places and I neglected his cursing education. I guess he'll have time to learn since we are stuck here FOREVER (mom whine).
The only good thing is that I am far from the only mom who wonders the halls in socks, showerless, hair wildly askew having technical conversations. Nice not to be the only freak.
Ill try to update when I can. Thanks so much for all your emails and comments!