This is a health story about a virus. But this story is about much more than germs. It’s not about political agendas, government mandates, or pharmaceutical profits. It’s an intimate look at a family’s respect for individual choice, their personal battle, and how decisions – even logical ones – sometimes have irrational outcomes.
Amy Gruber met Rob Tersteeg in 2011 through a colleague at work. She was employed at a construction company in Burnsville, MN, and the company attorney happened to be his sister. They were introduced, and over time, Rob started showing up more often. He worked as a safety manager for an oil company in ND, but their relationship blossomed over long telephone conversations and frequent visits. In 2013, they were engaged, so Amy relocated to ND, and they married a year later.
Amy started at Trinity Health in 2013 and has served as the assistant director of Operations/Physician Services for five years, which could also be tagged as “Outpatient Planning Chief.” Her job is to support the planning and logistics of various programs at Minot’s clinics, as well as several rural clinics affiliated with Trinity. For instance, Amy and her team are responsible for arranging COVID testing and vaccine clinics for the general public. “Setting up vaccination clinics is the most rewarding part of my career thus far,” she said. “It is a lifeline that offers some hope of things getting back to normal.”
When COVID vaccines first became available, the expectation was that staff would get vaccinated, and Amy didn’t hesitate. Her position at Trinity influenced feelings of responsibility to public health in the face of this new pandemic, and that it was the right thing to do. Rob wasn’t as quick to sign on, and like many, wanted more information about safety and outcomes. It wasn’t an immediate priority. “In our family, healthcare decisions are a personal choice,” she said. “I respected Rob’s choice (not to get vaccinated) and knew he’d get around to it sooner or later.” That decision would come to haunt them.
According to the North Dakota Department of Health, 46.8% of the population in Ward County has completed the primary COVID-19 series – slightly less than half. The Tersteegs divided decision of whether to vaccinate falls in line with many in our community.
In early May, they traveled to northern Minnesota for a family funeral. “It was a celebration of life, where we enjoyed time with family. Most were vaccinated, some wore masks; we maintained social distancing,” she said.
The next week at home, Rob developed a persistent cough and had difficulty breathing. “I remember saying ‘Geez, I hope it’s not COVID,’” Amy said. He decided to get tested for COVID at the walk-in clinic, to prove to his boss he could return to work. The follow-up phone call came quickly delivering news that indeed, Rob had tested positive for COVID-19. He was advised to self-isolate, rest, and treat his symptoms. The weekend promised sunny skies, and the family was anxious to put the boat in the water at their cabin, so Rob, Amy and their kids decided the lake would be the perfect venue for rest and relaxation.
Rob stayed home from work the following week. He and Amy had created a group text with friends and family to keep everyone updated on his progress. By Thursday afternoon, Amy noticed Rob was no longer responding to texts, which raised red flags. She tried calling, with no answer, so she went home and found him awake, but out of breath. Using a pulse oximeter attached to his finger, Amy took more than one reading to measure the oxygen level of his blood. An oxygen saturation level of 95 percent is considered typical for most healthy people. A level of 92 percent or lower can indicate potential hypoxemia, which is a seriously low level of oxygen in the blood. Amy’s results measured his blood oxygen anywhere from 64-67 percent. She was certain she must be doing something wrong, so she took him to the ER, “just to make sure” things were okay. Oximeter tests in the ER measured Rob’s oxygen levels at 74 percent; X-rays and a CT scan confirmed he had pneumonia.
On May 20, Rob was admitted to the ICU and given a gamut of medicines, as well as supplemental oxygen. His blood oxygen levels were not responding as hoped, so doctors later implemented high flow oxygen, which increased oxygen saturation levels to 88 percent for a short while. A week later, Rob was moved to a BiPAP machine, which is a form of noninvasive ventilation therapy. He hated the BiPAP but couldn’t breathe without it. Rob’s oxygen level hovered around 84 percent.
The highly contagious nature of COVID-19 generally does not allow patients to have visitors, so Amy sat vigil by a window outside his room. Someone provided dry erase boards, which allowed them to communicate by writing messages to one another through the glass. “Rob was tired. He was angry. He didn’t know why he wasn’t improving,” Amy wrote in her journal. “COVID is not merciful, but prayer is powerful.”
Despite the efforts of the critical care team, Rob’s blood levels were not responding to the supplemental oxygen, so a week later, the decision was made to prone him to allow the lungs more room to breathe and release secretions. Using a menagerie of pillows, cushions, and protective pads, the respiratory therapist helped turn his head, while a team of ICU nurses — three on each side — turned Rob onto his front side. He was sedated and left prone for 12 hours. This new therapy helped maintain Rob’s oxygen levels, but his continual respirating — as though he were running a marathon — had doctors concerned. If this continued, the next step would be intubation with a ventilator.
May 29 was Amy’s birthday. Rob had arranged with his nurse, Zoe, to have flowers, chocolate and a gift waiting for Amy when she came to visit. “Nurse Zoe had helped Rob make my birthday special,” she said. “Her touch was all over it, but his thought was behind it. It was pure love.”
The doctors’ concerns about Rob’s low oxygen levels continued, which led to increased preparations and conversation about the possibility of intubation. For the most serious COVID-19 cases in which patients are not getting enough oxygen, doctors may use ventilators to help a person breathe. Patients are sedated, and a tube inserted into their trachea is then connected to a machine that pumps oxygen into their lungs. Although ventilators save lives, a sobering reality has emerged during the COVID-19 pandemic: many intubated patients do not survive. Studies conducted during the first wave of COVID-19 pandemic showed 43% in-hospital mortality among patients who underwent endotracheal intubation.
That night shortly after arriving home, Amy got a call from the night nurse. “It’s time to intubate,” she said, “but Rob won’t do it unless you’re here.” Amy returned to the ICU, called for a chaplain and prayed with her husband.
Exhausted and afraid, Rob took his white board and wrote to Amy, “I am logical, I know it needs to be done. I need to make peace with it.”
“I would never let them do something that would take you away from me,” she wrote back.
It would be their last conversation.
On May 30, Rob was put on life support and airlifted to the University of Minnesota Hospital. He suffered intercranial bleeding and was pronounced dead June 3, less than one month after his diagnosis.
Nowadays, Amy has a lot of time to think. She thinks about him not being vaccinated, and not being here. She wonders if her last words to him sounded shallow or true. She regrets their last conversation took place on an erasable white board. But mostly, she is sad that one small decision forever changed their lives. She carries an emotional burden of “what ifs.”
However, she is certain that telling Rob’s story is necessary. “When we were in the ICU, Rob said to the doctor ‘I want to share my story when this is over. There is no way people understand what this really feels like.’”
“Rob was so full of life. He was so helpful and could be counted on for everything. He made a point to be at the kids’ games, concerts, even fundraising events. He was a great dad, always in the stands, always there to help,” she said. “We never discussed what was the right thing to do, but his decision created a huge change in our lives. He was invincible, until he wasn’t.”
Amy knows she is different than before. She is not the same mom, friend, or worker that she was six months ago. Now, the vaccine clinics Amy facilitates have taken on new, personal meaning, with greater urgency and measurable outcomes. “Rob’s illness could have been avoided,” she said. “I now wonder why wait to get sick and need treatment? Why not avoid COVID in the first place?”
“Rob was so afraid and alone; he would’ve wanted me to tell this story. If sharing our story saves a father, brother, uncle, nephew, or son for one other family, then this is worth it. COVID is a lonely way to die.”