The surgery for scoliosis that went frighteningly awry, Part 2
Our worst days were upon us as the procedure wasn't resumed for over a week
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Second in a series. Read part one.
Seventeen years ago right about now, my wife, Donna, and I sat dazed in a Delaware hospital as a surgeon explained that he had been forced to abort the spinal fusion he was performing on our daughter Abby because she’d gone into distress mid-operation. Anaphylaxis, it’s called — “a severe, potentially life-threatening allergic reaction,” as the Mayo Clinic defines it.
Abby’s spine had already been exposed and several screws inserted into it. After scrambling to stabilize her, the doctors and support staff put her back together with string and chewing gum — well, maybe it was something more sanitary; the surviving medical records are unclear — and gave her a round of serious sedating drugs while they set about trying to determine what caused her to crash. Thus began our longest days as parents of a child with Rett syndrome.
Scoliosis is one of the many unpleasant side effects of Rett syndrome, and Abby, who was 12 at the time, had developed such a pronounced spinal curve that surgery to straighten her spine with metal rods was required. The operation is invasive as hell but common in Rett patients, and her surgeon had performed it many times; we were expecting an uneventful hospital stay of maybe 10 days. No such luck.
The nine-day wait
The first issue for the medical team was to determine what had caused Abby to go into distress; an allergic reaction to one of the drugs used to knock her out ended up being the likely culprit. Keeping her immobile so the stitches in her back didn’t rip out was also an issue, complicated by the repetitive hand clapping and other involuntary movements common in people with Rett syndrome. Let’s not even mention the urinary tract infection she developed.
And our surgeon wasn’t about to rush her back into the operating room to try to finish the job; he wanted to make sure he had the right support personnel, and scheduling a small army of nurses, anesthesiologists and so on in a large hospital is not easy. In short, the surgery that had begun on July 30 wasn’t resumed until Aug. 7.
Those nine days, with Abby lying heavily drugged in a hospital bed in very fragile condition, were more emotionally draining than anything we’d been prepared for. “She still has tubes coming out of every orifice she has,” Donna wrote in a journal she created on the website CaringBridge to keep family and friends updated, “and she even has a few ‘added orifices’ with tubes and wires in them.” She was pale and bloated from all the fluids being pumped into her. She was, to be blunt, hard to look at. On Day 5, Donna, in the journal, described her as “looking somewhere between coma and death.”
But during these unnerving days, we — and Abby — learned that we weren’t alone. The hospital was in Delaware, 90 minutes south of our home in New Jersey, yet when word filtered back to Abby’s school that she was in jeopardy, her devoted physical therapist and two of her aides made the trek down to Delaware to cheer her and spend hours at her bedside keeping her from pulling out all those tubes and wires. A sister-in-law came from Pennsylvania to do the same, and Donna’s two sisters would eventually make the trip from New England. One of my brothers and his wife came from Michigan, and even made a side excursion back up to our house in New Jersey to mow our lawn, without being asked.
On the afternoon of Aug. 7, Abby was finally wheeled back into the operating room. Just before midnight, the surgeon finished his meticulous work, no doubt to his great relief, and certainly to ours.
Donna admitted in her journal that, during those nine days at Abby’s bedside, she had “probably lost anything that was left of my reputation as a nice person, a calm person, a patient person, or, in fact, anything but a hysterical maniac of a person.” She’d been relentless hounding the staff for information, making sure Abby’s medications were right, and so on.
As we sat in the waiting room, she noticed that we had somehow not received the name tags that other parents in the room were wearing. “How will the nurses know whose parents we are if they have an update?” she asked.
“I’d guess there’s not a single soul in this hospital who doesn’t know whose mother you are,” I told her.
Next: So did the procedure work?
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.
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