The surgery for scoliosis that went frighteningly awry, Part 3
Our daughter's month in the hospital changed our view of Rett syndrome
Written by |
Last in a series. Read parts one and two.
When our daughter Abby, who has Rett syndrome, went into a Delaware hospital 17 years ago for spinal fusion surgery to correct severe scoliosis, she had an allergic reaction to something partway into the operation. The surgeon had to halt the procedure, and it was nine excruciating days before he could resume. During that limbo, Abby was being kept alive by tubes and wires and a lot of sedating drugs. The kid, who was 12 at the time, looked awful.
On Day 9, the surgery resumed, and shortly before midnight, it was completed successfully. But there were hard weeks ahead. For starters, Abby contracted the obligatory hospital pneumonia a day after the operation was finished.
“In her continuing effort to meet every single soul who works at this hospital, Abby now has pneumonia,” my wife, Donna, wrote in a journal she kept on CaringBridge to update family and friends. “So infectious disease now joins orthopedics, neurology, critical care, gastrology, urology, genetics, allergy, anesthesia, surgery, and plain old pediatrics in sending a representative to join the daily parade of doctors who come to see Abby each day.”
There was also a collapsed lung to deal with. And, of course, no one just leaps up from a hospital bed after nine days of drugged-out immobility.
Abby gradually improves
Her medical team faced a complicated task of weaning her off the drugs she had been on, coaxing her to eat and drink again after having been fed through tubes for nine days, and rebuilding the muscles that were off duty for so long. (Unlike many with Rett syndrome, Abby has always been able to walk and has always eaten by mouth.) The child had lost 15 pounds during the ordeal, a lot when your starting weight was 63.
The process was grueling — on Abby and on Donna and me. Donna was on the front lines, logging long hours at the bedside and staying at the nearby Ronald McDonald house, the cheap crash pad for families facing medical ordeals. I was often commuting from the hospital, 90 minutes south of our home in New Jersey, to my job in New York City, 90 minutes north of our home. Both of us turned into zombies, struggling to stay awake, alert, civil, and sane. It’s hard now to read that journal Donna kept, because it was so detailed that it brings the whole nightmare back.
But Abby gradually improved. Twelve days post-surgery, there was a rehab breakthrough worthy of all-caps in the journal.
“ABBY STOOD UP, TOOK OFF, AND DID TWO LAPS AROUND THE REHAB GYM!!!!” Donna wrote. “THEN SHE SAW THE DOOR THAT LEADS OUT TO THE PATIO, HEADED FOR IT, AND WENT OUTSIDE — MADE ONE CIRCUIT AROUND THE PATIO — STOPPED TO LITERALLY SMELL THE FLOWERS — AND THEN CAME BACK INSIDE. ALL UNDER HER OWN STEAM.”
On Aug. 30, exactly a month after we’d checked in, they told us we could bring Abby home. Even before the complications with the surgery, we’d taken the precaution of having our minivan fitted with a power seat that rotates and lowers to the ground, because we weren’t sure how much mobility Abby would have after the spinal fusion. We could have saved the money. We’d also rented a hospital-style bed and had it installed on the ground floor of our house, since Abby’s usual bed was on the second floor, up 13 stairs we didn’t think she’d be able to manage. We could have saved that money, too.
We got home about 8 p.m. Abby had dinner, then walked up the stairs to her usual bed with ease, giving that rented hospital bed a look that said, “What the heck is that thing doing here?”
The straightest spine in the house
In the moments after her first surgery had to be aborted, the surgeon told us that before she crashed, he had gotten a good enough look at her spine to know that “she’ll be completely straightened once we’re done.” And he was right. Now, 17 years later, with Donna and I both in our senior years and crinkling up with old age, it’s no exaggeration to say that Abby has the straightest spine in the household. But getting it just about squeezed the life out of all three of us.
I know that many Rett syndrome families have gone through multiple hospital ordeals, some of them worse than ours. But for us, “the worst summer vacation ever,” as we’ve come to call August 2009, was a watershed. Before then, we, like a lot of parents of younger kids, were all, “Rett syndrome? No problem. We got this.” Now we realize that we don’t “got this,” and that very little about Rett syndrome is under our control.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.