Still not himself

Riley is still withdrawn but we're seeing some slight improvements. He is now making eye contact with Mom and Dad, but saying very little. We are trying to get the nurses to batch all of their procedures together so he will be left alone as much as possible. An hour ago they gave him his oral medicines (digoxin, amoxicillin and tylenol), IV meds (lasix), took his vitals, emptied his drains and changed his dressings and now they should be able to leave him alone for several hours. We're also going to talk to the child life specialist again today about ways to make him feel more like himself. We didn't bother with the birthday celebrations yesterday since he wasn't at all interested. The hospital brought by cake, a big banner and a present but we've stashed it away until he feels better. His birthday celebration can wait until he's ready.

A few days ago Suzanne experienced a scare when Riley's uncovered incision popped open after he was picking at it. He wasn't in any danger but it certainly isn't pretty to look at. Fortunately the underlying bone is wired shut. They just leave the wound open to treat, inserting wet dressings into the wound every 12 hours and covering with a light bandage. As a precautionary measure they put him on some Vancomycin to conquer staphylococcus (staph infection) although there are no visual signs of infection and the wound looks very clean. If the cultures come back clean they'll discontinue the Vancomycin since it can have kidney-related side effects.

Riley spent a few hours in a special chair yesterday and Saturday, and will spend some more time in it today. Getting him up and moving about is critical to drainage and a good recovery. He's in a very weakened state and has a hard time keeping his head up so the physical therapist will come by today with some more recommendations. It's difficult to get him sitting up with the pigtail drain in place. It's attached to a drainage box about the size of a cheap VCR. They're looking at more mobile replacements.

Yesterday we noticed that the pigtail drainage was taking on a more milky consistency. We'd been watching for this as a sign of chylous fluid since Riley had eaten some foods with fats (milk, french fries and crackers). Sure enough, it looks like Riley does have chylothorax as anticipated. That means we need to put him on a low-fat diet for the next six weeks until his lymph nodes can heal. Given all that we've been through, chylothorax isn't all that bad.