NEUROSURGERY FROM A CAREGIVER'S POINT OF VIEW
I have always fancied myself a problem solver, a trait I suspect emerged early. My ability to read, comprehend and synthesize information began as soon as I could understand words on a page. My earliest reading memories are from the wee hours of the night, when my exhausted parents would hand me piles of books to occupy my anxious brain in lieu of me waking them up every few hours. My father must have believed himself quite clever when he subscribed me to the Scholastic Nancy Drew Mystery club, believing that surely his insomniac first grader would finally have enough reading material.
I usually polished those novels off before dawn.
When Abby asked me to write about her surgery from my point of view, I returned to those childhood nights when I would read from bedtime to sun up, hoping to outwit the monsters that would surely burst through my windows if I closed my eyes. Because much of what happened to me during those weeks involved watching, waiting and worrying. And always fixing things.
Not enough can be said about how much of a character Covid became in this little drama. Brain surgery under the best of circumstances stretches everyone involved. Knowing that an army of invisible zombie creatures colonizing Abby’s nasal passages could undermine years of effort haunted every step. Covid set the timing of her procedure. Covid transformed what would have been a routine flight to New York into a drawn out, low grade panic attack. Covid informed every interaction we had from the minute we rolled into Salt Lake International in July to the time we rolled out of the same airport in August.
From March onward, watching the pandemic unfold felt a bit like the spectators taking their picnics out to Bull Run/Manassas, Virginia to watch the first major battle of the US Civil War: the skirmish was far enough away to avoid being a direct threat, but the reality of it proved terrifying. Abby’s surgeon, born and educated in northern Italy, was uniquely aware of how Covid impacted his native country. He kept us apprised of how things unfolded in the New York metro area from the start. The hospital where her neurosurgeon worked became an epicenter for Long Island Covid cases. Floors had been converted to Covid wards. Neuro patients who had been at the hospital during the earliest days of the pandemic witnessed a daily parade of suffering and death. From a distance, we watched and waited, wondering if Abby would be denied this shot at a possible recovery.
As Abby’s second surgery day approached, we received emails every other day updating us about changes to hospital protocols and New York State Health Department regulations. The specifics of these are less important than what it meant when surgery day arrived.
What struck me as I followed Abby up to the surgery floor was how heavy with quiet Mount Sinai hospital was. I can only compare the stillness with experiences I have had in houses of worship during services. People in charge are allowed to speak, but everyone else has to wait for an invitation. Having spent hours--days on end--in hospitals I find them to be hives of activity, especially training and research hospitals like the Mount Sinai system. Because of the rigorous screening process that visitors have to undertake, I always hovered on the edge of wondering when someone would stop me and tell me that I didn’t belong there. Turns out that my fears were well-founded.
Abby was moved to the medical-surgery floor two days after her procedure. Visiting policy limited individuals to 4 hours daily between 4pm and 8pm. I spent the day answering text messages. Cleaning up the hotel room. Puttering. Pretending to be calm. By 3pm, I was at Costco, filling my car with gas, killing time before I could show up at the hospital. A panicked message arrived. The day had gone poorly for Abby. Her pain was out of control. Mentally she spiralled toward collapse.
I immediately left for the hospital.
Routine screening is part of visiting hours. I queued up, provided my name and waited my turn. I read through the questionnaire. The question of “have you recently travelled from one of the following areas” struck me. Having travelled the previous week from a designated hotspot, I knew I should answer the question affirmatively. I also knew that I had passed three Covid tests in the past few weeks after self-isolating for essentially a month. If anyone could feel justified in fudging the truth about my traveling, I thought I could. However, I decided to be honest.
And I was flagged.
Staff pulled me out of line and led me to a separate location, similar to what happens when TSA decides you need additional screening at the airport. Hot red adrenaline flooded my brain. A man with a badge identifying himself as the head of something sat down with me, explaining that I couldn’t be allowed into the hospital. Tears erupted; my mouth engaged, sans brain. I had been in the ICU the previous night. I had been on the surgery floor two days ago. I had passed THEIR Covid test. I had followed every rule and procedure voluntarily. He told me my negative Covid test didn’t matter--rules were rules. My child was in trouble and I could not be sent home. I sent frantic emails to the neurosurgeons office. FIX THIS.
I don’t know how long I sat in that hard, plastic chair, trembling. What is it with healthcare settings and uncomfortable seating? It’s not like anyone really wants to be in that setting to start with and choosing hostile furniture seems to be the norm in every clinical setting I’ve been in. Eventually The Head Man crouched down beside me and informed me that the hospital had authorized me not only to visit Abby, but placed me on the exceptions list so I could come and go as I pleased until Abby was released from the hospital. He handed me a badge, walked me to the security desk and pointed me toward the elevator banks.
You never want to find out that things are actually worse than you thought, but when I made it into Abby’s room, things were worse than I had imagined. Abby had slipped almost into a dissociative state. Her pain was a 12 on a scale of 10. She couldn’t remember when she had been given pain meds. The stories poured out of her--being forgotten on the toilet and ignored when she pulled the emergency cord, asking for medication but no follow through, not knowing what was going on around her. I set to work, talking with the nurse manager, getting up to speed on her care. Eventually her less than apologetic nurse showed up and tried to gaslight her into believing that she had been offered and refused pain medication but I wouldn’t let her get away with the self-deception. I asked for a dry erase marker, wrote down times and meds on her white board. The very unhappy neurosurgeon called me and asked for my take on the day’s events. His phone call to the nurse’s station sent heads rolling.
From yet another uncomfortable chair, I watched Abby’s vitals on the monitor, set alarms on my phone to remind me to check in with nursing. All plans suspended. Hours slipped by. Abby calmed. A neuro PA checked in and taught me how to change Abby’s dressing. The night nurse demonstrated enough competence that I felt a little reassured. About midnight, I returned to the hotel to pick up clothes and food. I showered, crammed some hotel pillows in a duffle bag, located my electronic chargers, packed what edible odds and ends I hoped wouldn’t grow salmonella without refrigeration and drove back down the turnpike.
Once at the hospital, I bundled up in a sweatshirt and joggers, trying to situate myself so that sleep might be possible without blankets and while wearing a mask, and I did what I always do in the middle of the night when sleep eluded me: I read a book. Appropriately enough, a detective novel.
I kept vigil by Abby’s bedside for several nights, slipping out for one quick shower at the hotel and Italian American comfort food from Bombino’s across the street from the hospital. I ate in my car, shoveling in spaghetti with marinara. Attempting to mentally regroup, I steeled myself for more hours in the miserable chair, more passive aggressive interchanges with nurse Maddie, more watching and waiting, hovering over my child willing her to heal and her stubborn, malfunctioning body to improve after having a piece of her brain cut out.
In and out. Mask up. Hand sanitizer. Covid screening. More hand sanitizer after riding in the elevator. Standing six feet away. Neck aching from being hunched over my Ipad reading. Snacking on pumpkin seeds and eating Trader Joe’s chocolate cake straight from the pan. Would I ever eat a vegetable again? Wailing patients in adjacent rooms. Staff shuffling up and down the halls. Wondering where I could find a massive Coke Zero with loads of ice.
All of it is blurred together in a banal montage of stress-infused memories. No monsters in the windows, but plenty of anxiety, kept at bay by book after book.
Appropriately enough, Hurricane Isaias barreled up the Eastern US coast as Abby prepared to leave the hospital. Having already faced much scarier foes, I laughed. And immediately went to NOAA’s webpage to read up on whatever threat faced us next.