The first time the ICU nurse tried to disconnect my spouse from a ventilator, it failed. While the national conversation on COVID-19 is about potential shortages of ventilators and survival rates, there is a long road to recovery after a ventilator. I know because when my husband, Ted, was intubated for four days 10 years ago, it took an immense emotional toll on me and the rest of our family. Survivors of COVID-19 and their loved ones and the ICU will return to the world changed in unexpected ways.

From ER to ICU

We didn’t know where Ted’s bacterial meningitis and sepsis originated. He had an earache, and because he is a cautious type 1 diabetic with asthma, he had gone to his primary care for antibiotics that afternoon. In the evening, feeling dramatically unwell, he went to the ER, and a spinal tap revealed the meningitis. He was placed on a ventilator to control his airway and moved to the ICU. He was 39.

While Ted was on the ventilator in the ICU, he had a blood-pressure cuff and an IV and a catheter and a pulse oximeter and other monitors. I tried to touch him in places where he wasn’t connected to machines. I kissed his forehead and fingers. His eyes were partly open, and the nurses put a gel on them periodically to keep them moist. He was swollen with fluids.

I did a lot of magical thinking during Ted’s unconscious days. I pretended if I stayed with him, he wouldn’t die; I thought if I asked the right questions, maybe he wouldn’t die. Time moved both slowly and too quickly, and I was numb as I learned a new language of Propofol, Rocephin, lumbar puncture, nonresponsive seizure, picc line. The whiteboard in his room said “Edward.” I erased it and wrote “My name is Ted” in my messy left-handed scrawl.

“It will take years off your life.”

During the long unresponsive days, we read to him and played him music and tried to figure out his iPod password, all while grappling with the terror of what might happen next. One nurse told us: “He will wake up and not remember this, but this will take years off your life.”

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After four days on the ventilator, the pulmonologist began to discuss removing it. Ted’s parents and I wedged ourselves around the bed. We said his name and urged him to wake up. His nurse had reduced the sedatives, but he did not respond. We played songs from his Rock Band play list — loud — but it still would not wake him. His nurse dialed the sedatives back up, and the vent stayed in place. I was devastated. More than anything, I wanted to talk with Ted.

The next day another nurse called me back to Ted’s room for the second attempt at extubation. This time I was there with his nurse, the pulmonologist, and a respiratory tech. I stood at the foot of his bed and said, “You’re like a cat with a hairball, honey. They are taking the tube out now,” while I tried to orient him.

When they finally extubated Ted, I was surprised that the tube was longer than I had ever imagined. I had hoped after extubation he would say hello, but he did not wake up.

It was surreal to see Ted still unconscious. I had focused on extubation as a goal. Ted didn’t seem to be in pain, but I was frozen with the continued waiting.

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A missing memory

At 4 a.m., about 36 hours after Ted was extubated, I called the nurses’ station, expecting to get the same report: unresponsive. Instead, his nurse said, he woke up when she brushed his teeth. I immediately wanted to go in, but I was told to wait for visiting hours.

When we entered Ted’s room, I burrowed into his side like a limpet. His voice was strained, higher than usual, vocal cords hoarse from the intubation. He knew things, such as who was president and where he was. But as the nurse predicted, he didn’t remember the intubation.

Healing, together

Ted’s recovery was not in a straight line. He became “better,” but “well” took years. And I’m still recovering, too.

Because he was hospitalized at the end of April, blooming azaleas still sometimes remind me of the ICU and bring a startled feeling, as if I have left the stove on. I still avoid driving by the hospital, especially when the trees are in bloom.

Given Ted’s asthma and diabetes, I am terrified of COVID-19, and I am distraught that other families might not be able to be with their loved one during an ICU stay. The ICU changed what we talk about. We have discussed how high Ted’s temperature needs to be before we go to the ER if he has COVID-19. While we still do not have wills or health-care power of attorney, we have talked about not wanting intubation.

The isolation and confusion of an ICU without a family member will have a tremendous psychic cost.

As we are coming together now to support social distancing, we will need to rally over the next several years to support and care for survivors and their families. Surviving the vent is only part of a long journey back.

Ann E. Green teaches “Hospital Stories,” a service-learning and medical humanities course at St. Joseph’s University in Philadelphia. She is a professor of English and writes about issues of mass incarceration and the medical humanities.