Hospital time - Day 12
Just so you know, this is our second spring break in a row visiting the Club Med UCLA Hospital - Santa Monica. Our first was, of course, last year, and this year we returned. The staff here is young and beautiful and really attentive. Every now and then, an elder appears but rarely. Activities include regular vital checks, lift team check-ins, a non-working television (new, we’re told, but not working so great), an array of drugs, and a lot of plastic. When I say a lot of plastic, I mean a lot of plastic. Probably enough to fill at least a small part of the Pacific Ocean whose glint you can see from the hallway windows when you walk the labyrinth to the pavilion where we’re staying.
Sophie decided that instead of 21 days, she’d prefer 11 in the ICU. Now we’ve moved out of that section of the establishment and into what appears to be a walk-in closet with a great view. Let’s say that’s its name: Walk-in Closet With a View. Description: Cosy single that sleeps two with one hospital bed, one broken-down recliner, one EEG telemetry machine, one ventilator, one suction/oxygen/whatever machine, one skinny bench/window seat, and one COW (computer on wheels where doctors and nurses spend most of their time, charting, I imagine, always charting). Amenities include a tiny yellow lock box with a secret combination that only we know where we can store Sophie’s cannabis medicine. It’s a Club Med protocol, something I wrote about last year when I had to do a little wrangling (threaten to sue) in order to make sure that Sophie got her seizure medicine. Our room also has A View, a pretty spectacular one. Reader, as I type we are flooded with sunshine, and I’m looking out on snow-covered mountains in the distance, lines of tall-skinny palms and the metropolis in the near distance. Southern California, baby. This is what the big bucks get you. When I objected to the size of the room in a kind of crazy fit last night that I’m only slightly ashamed of today (I believe one of the transport people responded to my anguish and 11 cumulative days of constant stress with a shrug and a side of sarcasm but at this point, I don’t really give a damn), they showed me another room that had no light. It was kind of a fairly spacious cave — in fact it was called The Cave, so we settled on the Walk-in Closet With a View and here we are. There’s a perfect spot in between the rails of the bed where I can place my elbow as if it were an armrest in a luxury car that doubles as a bed and hold Sophie’s hand. We’re watching Green Acres, Sophie is on a trial of breathing room air, so far so good, and we’re settling in for the rest of Spring Break. We’ll be in touch.
One Easter thirty some years ago, our four-year old Kim, recovering from pneumonia, was being weaned off the drug they had used to paralyze her so she wouldn’t injure her lungs with the ventilator set so high. Or so I understood.
Spina Bifida had already paralyzed her below the waist, and several years later a bad neurosurgeon would additionally paralyze her entire left side with a botched shunt revision. But now she was waking up.
We had visited the pediatric ICU every day, but of course she didn’t move, and her open eyes were covered with some ointment so they wouldn’t dry out because she couldn’t blink. (She later told us she thought she was dead because she could hear us but our faces were so blurry.)
Today we brought her sister, 6, and lunch, and in the afternoon a large Easter Bunny brought the girls two small baskets of jelly beans.
Kim’s crib was tilted for some reason, head higher than feet, and when my husband put a jelly bean near her face, it rolled. She laughed. The most beautiful sound.
This is what I hope for you both now, some lightness of heart.
Such adventures. May tomorrow bring peace and strength. You two are extraordinary, and it’s a privilege and a balm to read your stories. Thank you.
The thought of the sun and the view brought a smile to my face, though not so much the Cave room and broken things. I hope the sun brings more to both of you.