Not so fast

It's been one week and a day since James arrived at the hospital for his Fontan, and it seems he will be here a while longer still.

The complications and "rough start" after the Fontan are slowly getting better, but he's not done with them yet... and that delay is starting to be an issue in itself. Immobility and swelling are not easy on the body.

The fluid leakage (pleural effusions) in his chest are still lingering around, and the leaking actually has picked up pace lately. Even worse, he's leaking fat - a condition called chylothorax. Basically, he started eating over the weekend, but his body is still so waterlogged that the pressures in his body aren't allowing his body to drain properly, so fat is entering his lung cavity and making it more difficult for him to breathe and recover. This is not good, and it means another week or so in the hospital at minimum, and he's back to a no-food regimen with IV instead.

He's been starting therapy to sit, stand, and walk but we didn't get far. Sitting went ok, standing was attempted but he didn't actually put weight on his feet, and so walking clearly is not going to happen yet. He barely moves his hands still, and even his favorite activity (the ipad!) is not inspiring him.

He is covered in bruises and scabs, and the amount of swelling makes it hard to get IVs and needles in him as needed, so he's been poked and stuck all over the place. The swelling also makes it uncomfortable to move, but without moving the swelling doesn't go away. No food for 48 hours won't help him want to exercise either.

We had hoped for an uncomplicated Fontan, but that's not what we got. The first couple days had his doctors scared. The pleural effusions are turning out to be a big complication, which could potentially mean weeks of recovery still needed. Next steps (and hope) are to see if 48 hours without food fixes the chylothorax. Best case scenario, this approach works and his fluid keeps draining and 1 more week in the ICU will be enough.

He is fully awake now, no longer in a fog, and he's clearly scared - but he is also so brave about all this crazy activity around him. He appreciates all the love sent his way!