We've been so busy catching up on sleep and chores, re-establishing routines, and helping James adjust that we haven't gotten around to posting since James' discharge. We've had a fantastic and fairly normal week and a half, although James is in a recovery period where a lot of medications and continued monitoring is necessary.
Getting the chylothorax leak to stop was a major step, but now it has to stay stopped and gradually heal. This means a minimum of 6 weeks on a very strict no-fat diet, hard to do when the patient is a little boy who barely eats as it is. He has a prescription for a medical-grade powdered calorie drink so he can get some of the calories and nutrition he needs without any fat. It's still not enough to meet his nutritional needs, so we have weekly checkups and blood tests to make sure his vitamin levels aren't dropping too low. Keeping him healthy means carefully balancing a no-fat diet with healthy nutrition.
He also has a hefty mix of drugs to take each day. Fortunately, James is a champ at taking his medications. We spend about an hour and a half each morning, then the same again in the evening, administering meds and spacing them apart as needed.
He's had regular checkups with his 3 primary doctors (cardiologist, pediatrician, and GI) and they've all been huge successes. His doctors love how rosy he looks! His X-ray is still perfect, his chest is clear, his lungs sound good, and his blood work has shown improvement. He is supposed to have physical therapy and occupational therapy, but the home health service basically wasted a lot of our time and hasn't provided any service yet (though they've managed to make me thoroughly angry).
James is rebounding all on his own though. He walks and climbs stairs and does most everything he did pre-surgery. He walks a bit stiffly, but he hasn't even been home 2 weeks... we are positive he'll continue to progress. He wakes up each day and asks for solid food: bagels, pizza, broccoli, cereal, hummus, macaroni. Pre-surgery, he ate 90% liquids only, and now he chows through solids! It's been an exercise for us to figure out how to make all these foods fat-free, but we are rising to the challenge.
