We escaped! Oscar’s first request, as he was rolled out of the hospital yesterday afternoon, was to submit his ballot. He transferred from the wheelchair to his walker and we wove our way through the hospital plaza and along the walkways over to the adjacent building where he slipped it in a drop box. He’s spent the last six months sending postcard to voters, keeping up on congressional races, researching policy positions, and, in the last 100 days, drafting a letter to Kamala Harris with ideas for her administration. (Fun fact – they went to the same kindergarten!) He was bummed that we forgot to mail his ballot en route to surgery last week, and relieved to drop it in himself yesterday.

So here we are, comfortably at home, managing pain and ongoing GI issues. The hospitalists were hesitant at first to release him due to his persistent ileus, but he seems to be improving daily, at least clinically. We’re also managing positioning — Oscar’s brace protects his trunk and keeps his head facing straight ahead and aligned with his spine. But he needs continual reminders not to turn or tilt his head, not to twist at the waist, not to plop onto the couch when sitting, to keep his nose aligned with his belly button and his chin tucked in. One of the major complications of this surgery is proximal junctional kyphosis (PJK), where the spine abnormally curves above the instrumentation and can lead to failure. Because of PWS and the more common “head forward” position that people with low tone often assume, and because Oscar’s fusion is so long, he is at significant risk for this devastating complication. We’ve been referring to this as “falling off the rod” and it can happen at the bottom of the fusion as well. A failure would require additional surgery and extension of his rods (and loss of function). Oscar is motivated, and completely compliant, and will wear the brace for at least three months, with ongoing precautions till at least the 6-month mark. It’s going to be a marathon, but he’s in great spirits, and currently resting so he can enjoy election night coverage in a couple of hours.