Well, here we are again, back in the hospital again for spine surgery. Different coast, different hospital, different procedure, and yet the echoes are deafening. 

A quick catchup since I seem to only write when Oscar is in surgery/recovery as a way to keep everyone updated: Oscar is almost 24 years old now, and spent the first four years after high school graduation slowly accumulating credits in history, political science, environmental science, music history, and spanish at two community colleges. He’s nowhere near a degree, but he’s a learner, and that’s been the hardest opportunity to maintain for him because of the supports he requires to feel successful. Last January he moved into Prader-Willi Homes of California’s first supported living house with three other residents with PWS. He enjoys the autonomy, has incredibly caring staff, and was loving his day program working in gardening and animal husbandry (he was the “goat whisperer”) until the level of support he needed became untenable. He loses focus, needs some clear, kind limits and a lot of help managing anxiety, more than a 1:6 ratio could manage. We’re trying meds and will try again. 

Back to surgery – after his anterior scoliosis correction (ASC) surgeries in 2016 and 2018 we’d hoped we’d be done with spine stuff…but it was clear almost from the start that the 2018 surgery wasn’t going to achieve the kind of correction and fixation that Oscar would ultimately require – not just for cosmetic reasons, but to avoid pain and organ compromise in the long run. His curve kept worsening and I stayed in denial until last spring when Oscar and I started collecting opinions from six surgeons. So now, today, he’s getting the once-dreaded spinal fusion, from T3 to L3…a no-kidding-around kind of surgery. And we’re hoping they’ll add in a thoracoplasty to help re-shape his rib cage that was deformed by the rotation.

Oscar moved home with us two weeks ago, to quarantine and to knock out a bunch of pre-op (and other) medical appointments. He’s managed the stress, the uncertainty, the enormity of it quite well. And we’ve shielded him from the most graphic of information. But today, when team after team of medical professionals paraded through post-op: the nurses, the surgeons, the hospitalist, the anesthesiologists, and the surgeons again, reviewing all the information, planning his medications and post-op gastroenterology interventions, discussing endocrine consults, and doling out surgical caveats, I started to get a little choked up. 

In good news, Stanford’s new hospital is gorgeous. We had delicious take-out salads (poke for Paul, quinoa beet for me) in the wrap-around gardens, where tables and couches are clustered in small groupings surrounded by lush greenery and sculptures. And are now sitting in the sunlit library, waiting for updates. We’ll keep you posted!