The Irony of Eating

A couple of days ago, James was diagnosed with chylothorax, a life-threatening complication from his Fontan procedure, where fat and lymphatic fluid from the lymph system drains into the lung cavity, making it difficult and eventually impossible to breathe. They discovered this from the fluid he's been draining from his right pleural cavity. And when they found out, docs were scrambling around all day, arguing about best courses and steps to take, and all the while they kept James awake and annoyed, further annoying him by trying to find new places to put IV lines.

Apparently, the only way Docs could agree on to cure his complication was to take him off food and water (i.e., starve James) and put him on IV nutrition for the next 24-28 hours, then transition him to a low-fat diet. It's a bit ironic and silly that, before the surgery, James was on a high-calorie, high-fat diet, doctors said, to help his body be better prepared for recovery, and now that he is recovering, the thing his body needs is the exact opposite.


So, they've had him on IV nutrition for about 36 hours, and today, his pleural fluid is looking clearer, which is good, but it still has a high lymph count and the quantity hasn't lowered, which aren't good. He also is showing increased fluid in his left side, which is also not good. This means James might have another procedure tomorrow, inserting another chest tube in his left side, so both sides can drain freely.

Medically, James is staying the same: critical, but stable, with a long way to go before he can come home.

Psychologically, James is coming back! This morning, he sat up in a chair, played with his iPad and stickers, drew with crayons, and said some words. He's much less guarded about people coming into the room, and he's occasionally smiling, even giving some of his nurses and doctors high-fives.