Chapter 27: This Is Not How It’s Supposed to Go
The war resumes with our hero, once again, sustaining the first blow in battle.
“There’s about to be a mob of people rushing in here," Jamie warned.
She evidently knew what a Rapid Response was from her experience working in a hospital. It’s one step below a Code Blue — as in unresponsive and needing CPR.
First through the door were three nurses and a pulmonologist, all donning what appeared to be hazmat suits. The doctor pulled up a seat next to me and with the sternest of looks spoke candidly.
"We’re transferring you to the intensive care unit, Scott. With your breathing scores, I’m concerned that you’ll need invasive ventilation. And, should we go that route, you’ll want to be somewhere in the hospital that can be more responsive." She hesitated before continuing, "Now… what I’m even more concerned with is your respiration already being compromised from ALS. There’s a good chance that once we put you on a ventilator you’ll never breathe on your own again. Have you two discussed the option of a tracheotomy yet? Or what you’d want us to do in the case of a Code Blue situation?"
Wow, that really escalated.
In truth, Jamie and I had put off that conversation. Only when we were in the emergency room did Jamie bring up all that "living will" stuff. Evidently, she can also see into the future. Still back in the ER (before being admitted to the hospital), I tried to reassure her through some poorly timed comedy that I would be fine. Doing my best gangster, tough guy impression, I managed to slur, "I ain’t going out like some punk bitch."
The joke landed as it actually received a laugh (more from surprise than humor, undoubtedly). But then the resident came bursting into our little pod to ice both me and my audience with less-than-desirable lab results. Turns out it wasn’t a cold that was causing my uncontrollable coughing fits; it was COVID-19. And that changed everything.
Gone was the confident comedian.
While I sat stunned, Jamie pressed the uncomfortable decision lying ahead. She had seen firsthand how brutal the surgery and subsequent recovery are for a "trach." Her accounts scared me as equally as my thoughts on death. Too petrified to tip the scales myself, I deferred to my wife, who’s seldom wrong.
"No tracheotomy but resuscitate or intubate long enough to say my good-byes to the girls," we agreed.
This was when they admitted me to the hospital. And before I could fully settle into my new room, a breathing test was administered that triggered the Rapid Response. Now I had some pulmonologist, towing a trio of nurses all named (I shit you not), Taylor, interrogating me about life and death.
We explained our wishes and everyone in that room, including the Taylors, knew instantly what that meant. I might never leave this place. As is often the case, I looked to Jamie for strength. But my normally Marcus Aurelius-level stoic wife was too busy falling to pieces.
Doesn’t the universe know that this is not how it’s supposed to go?
My father, from the foot of the bed, rose to the occasion to bark his order: "You need to fight for your life and NOW!"
In the midst of a coughing attack, I could only nod my head in affirmation. These episodes got so bad at times that my respiratory muscles and epiglottis would "lock up," rendering me incapable of inhaling anywhere from ten to thirty seconds. And my cough, though persistent, was too weak to produce anything, so I was basically choking on whatever partially came up. Not only was it miserable but also frightening as hell.
More and more healthcare professionals began to spill in. One new face set me up on a nasal cannula for which I was eternally grateful. Once the oxygen was flowing, I finally started to relax.
Attempting deep breaths only proved to trigger the cough. So I started taking shallow ones whilst simultaneously repeating (in my head) one name per exhale.
Iris, Hope, Jamie, Scott, Iris, Hope, Jamie, Scott, etc.
It appeared to help me stay focused on the battle to breathe.
The task of transporting me all the way across the hospital to ICU fell to the Taylors. Temporary goodbyes from the family could be heard as we set off on our journey.
Out the door…
Iris, Hope, Jamie, Scott, Iris, Hope, Jamie, Scott
Down the hall…
Iris, Hope, Jamie, Scott, Iris, Hope, Jamie, Scott.
Into the elevator…
Iris, Hope, Jamie, Scott, Iris, Hope, Jam-
Interrupting my meditation was the voice of Taylor number one, "So how’d you get stuck working this weekend?"
"I don’t know. But I’m not happy about it," responded Number Two.
Number One seemed to concur, "Right? It’s so nice outside right now!"
Back to my mantra: Iris, Hope, Jam-
"I wasn’t even originally scheduled for today!" Number One, unable to let it go, stretched the conversation. "How about you?"
The third and final Taylor spoke at last, "I’m still in training."
"Ohhhhhhhh," Number One and Number Two offered what appeared to be their condolences in unison.
Having finally reached its destination, the elevator’s doors parted.
We traveled along a never-ending glass bridge connecting the hospital’s two main buildings. The negativity continued amongst the Taylor triad. It is in this moment that I distinctly recall thinking, "How can all three of these able-bodied women, who are nowhere close to dying, NOT see how ridiculously fortunate they are? Just fucking look down!"
Surreal as it was, I was strangely comforted by their nonchalance toward my medical emergency.
Perhaps they see this so often, they know I’ll be fine. Such is their confidence in the medical staff here.
The trek across the hospital felt like it took a lifetime.
"Small bump coming sweetheart," a rare courtesy from Taylor number one.
Another elevator, three more hallways and we were there. Upon arriving at the intensive care unit I was parked in the very first room.
After an awkward transfer to my new bed, the latest nurse in the rotation introduced herself, and I’ll be damned if her name wasn’t Taylor too! I strained myself holding back laughter lest I surely die from asphyxiation right then and there. So instead I just smiled back at her.
My mom, dad and Jamie traded shifts thereafter because I couldn’t be left alone for a single minute. I needed constant suctioning of the mouth and throat to keep from aspirating. The respiratory therapist, every four hours, popped in to administer a special nasopharyngeal suction, which was basically a tube run up my nose, down my throat and into my lungs. Next, all the gunk that my feeble cough couldn’t expire was vacuumed out.
If only the Spanish inquisitors of the Fifteenth Century had got their hands on one of these babies…
I was put on a steady course of Remdesivir and Tocilizumab to help my body fight off the virus, antibiotics for the pneumonia, fluids for dehydration, Oxycodone for pain, Tylenol for my fever, and lastly Valium for thinking I was going to die.
Ironically, the Tocilizumab was still a highly experimental drug with serious possible side effects, but the FDA fast-tracked it and subsequently authorized it for "emergency use." Meanwhile, perfectly safe and effective ALS treatments remain caught up in bureaucratic red tape for years on years. But I digress.
The first night was the scariest. Fever and ineffective cough raging, I knew if things got worse I’d soon be saying my goodbyes.
Iris, Hope, Jamie, Scott, Iris, Hope, Jamie, Scott… for ten straight hours.
By the next morning the fever broke despite my zero sleep. It was a much needed victory but I wasn’t out of the woods yet. My breathing wasn’t getting any better. In fact, it was getting worse.
They increased my oxygen in response. That helped my saturation levels and eased the doctors’ worries. Despite that, the coughing was still terrifying me. I eventually learned to relax rather than freak out while it was happening. This technique shaved 20 seconds off the zero oxygen intake timetable, but I was still going 10-seconds without breathing.
Thankfully both the following night and day went smoother. Coughs became increasingly more productive. I remember crying tears of joy as it sunk in:
I’m going to survive this.
My mom taking her shift at the University of Kansas Medical Center.
I was, however, still being sustained by a heavy dose of oxygen. I would remain in the ICU six more days until I fully stabilized. Afterwards, they moved me to a general medicine floor, where I was to be "weaned" off oxygen.
Our new digs in "gen med" were much more comfortable. To be sure, the lack of imminent death threats played a part in that. A house-money, borrowed-time feng shui filled every crevice of the suite. Even the view was better, as was my outlook on life.
Fresh labs revealed my liver did not like the Tocilizumab so they took me off that. Go figure.
Four more days passed and I was finally set to be released. Come that time, I was grinning from ear to ear. My sleep-deprived wife looked at me like I was being let out of an insane asylum. You would have thought that someone diagnosed with ALS would be well aware of just how fast life can change dramatically, but no. As emotionally and physically insufferable as this disease can be, I found out that I was NOT ready to die.
The ten-day hospital stint was the longest I had ever gone without seeing the girls. And I was dying … errrr… longing to see their cute little faces. On the drive home, I fantasized the entire time about the reunion. I had it all planned out. Hope would come crawling around the corner into the entry to greet her father with a single-toothed smile. And Iris, upon seeing me, would uncontrollably squeal out "Daddy!"
But when we came through the door, all I could hear was Hope crying from another room. Jamie and I cautiously inched my power chair forward until we were eventually met by my mom. She was holding hands with my three-year-old. I made a funny face aimed at Iris and awaited her response. She took one look at me, slowly turned toward my wife and then screamed at the top of her lungs, "I want a snack!"
This is not how it’s supposed to go.