Oscar had a great night, sleeping a good chunk, but this morning he’s lethargic and heavy-lidded, barely able to respond to simple questions. His belly is distended and he’s sweaty and lightheaded. He’s not that interested in liquids, even diluted apple juice, and we had to coax him to lick a grape popsicle. The abdominal x-ray shows an impressive amount of gas. (But no stool!)
The surgical team and PICU staff have been in and out of our room all day. I keep finding new ways to say: This is not normal! Oscar never refuses juice and popsicles! He is able to say his whole name and his pupils look okay, but he didn’t want to tell the nurse who the Oakland A’s just swept, and I can barely understand him when he does speak. I’ve scanned all the PWS medical information that I brought with me and repeated all my concerns to the PICU doctor. He ordered some blood work to make sure we weren’t dealing with something more serious…but the best medicine, everyone agrees, is to get Oscar walking.
So with the help of the PT and our nurse, we sat him in the chair for a bit, watching his blood pressure and trying to keep him alert. The Child Life staff stopped by with a rolling cart of toys — science kits, art projects, Star Wars figurines, and sports balls. With much coaxing, Oscar opened his eyes a crack and pointed toward the basketball.
And then we got him up to walk. With the physical therapist supporting him on one side and the nurse on the other, he labored down the hallway. Paul followed behind to catch him if he passed out, and I trailed with the wheelchair. He pushed through though—of course he did—and made it all the way to the end of the hallway again.
The medical team has a couple more ideas to help move the gas along, and we’re hoping the lightheadedness will resolve with that. Until then, keep him in your thoughts. I’ve not had a chance to respond to all your comments but I’m reading them to Oscar when he’s responding, and he’s feeling so supported. He’ll get through this, that’s just who he is.