Lucas Camilo

It’s been six days since Lucas got released from the hospital after his spinal fusion surgery. Here’s what he has to say about it:

“Things have been going pretty well. I’m been staying on the couch a lot listening to playlists and audio books and watching stuff.

“We’re still figuring out getting up on my wheelchair. I’ve been feeling a lot of numbness in my left foot and we don’t know why that is. That makes me a little nervous about going back to school.

“I’ve been enjoying watching fun shows and movies with Ida, like Carmen Santiago and the really funny new Netflix musical ‘Leo’ about a lizard.

“I got a visit from my old friend Jonah yesterday, and on Thanksgiving I got visits from my cousins, Aunt and grandparents. It feels good to see people after being in the hospital for so long.”

Indeed, the most frustrating thing has been the challenge of sitting up in his wheelchair. In the early days of his return he would be up in his chair for 30 or 45 minutes and suddenly get pale and his heart rate would drop. We’d get him back down on the couch and his color would come back. That only happened a couple times but the problem of numbness in his left foot has persisted. We’ve reached out to doctors and physical therapists and mostly they agree that it must be positional, something that’s cutting off blood flow to his foot. But we’ve tried lots of things, from propping his foot up on decks of cards, shifting his position in the chair, and using multiple different seat cushions, and nothing seems to work so far. We got a glimmer of hope yesterday when he was up for nearly 2 hours in his wheelchair without any noticeable numbness… but then today the left foot was back to its old tricks 10 minutes after getting up. He can still last up to an hour even with the weirdness of his foot feeling numb, but then he asks to get down. In order to return to school he’ll need to be able to sit up in his chair for 4 hours, so he’s got a ways to go.

Other signs are generally good. He’s still having some pain but it’s improving. His energy is good during the day, and as he mentions above, he’s figured out ways to keep busy and entertained while he spends most of his time lying down. Lucas’s shockingly good spirits in the face of so much  — first pain, now boredom and upheaval of all our routines — buoys us on the hard days. He remains an amazing kid, living like it’s no big deal in his sometimes difficult body.

Lucas helped Jonah with word games and questioned whether his mustache was real