Covid-19 patients who survive the ICU have a long road home

June 9, 2020 steven

WHITE PLAINS, N.Y. — Hugo Sosa arrived here a hero, triumphant over the worst that covid-19 can inflict on the human body. Nearly 100 of his fellow first responders whooped and cheered as Sosa was wheeled out of a hospital last month. They chanted his name. He flashed them a thumbs-up from his gurney.

Twelve days later, frail and drawn in his room at Burke Rehabilitation Hospital, Sosa puzzled over a pile of coins his speech pathologist had set before him.

“Forty-five cents from a dollar, what do you get back?” Kristen Lucke asked.

“Fifty-five cents,” Sosa responded quickly.

“Good, show me 55 cents.”

That was more difficult. Sosa would have to hold the number in his head while he searched for the right coins. Today that was too much to ask. Perhaps tomorrow.

LEFT: RIGHT:

New York EMS Capt. Hugo Sosa tries to improve his working memory with speech pathologist Kristen Lucke at Burke Rehabilitation Hospital on May 28. The brain damage he suffered can make it difficult for him to hold a number in his head and find the right coins at the same time. (Photos by Jabin Botsford/The Washington Post).

For the fortunate covid-19 patients like Sosa who survive intensive care and long stretches on ventilators, the journey home can be an arduous and lonely one that runs through places like Burke. Their survival is testament to the lifesaving value of some of the world’s most sophisticated medical interventions, but their deficits reveal the toll of the disease and of hospitalization itself. Their futures can depend on what happens here.

“A lot of the time, it’s a win to get discharged from the hospital,” Lucke said. “Everyone forgets there are so many things that go on before you actually make it home, if you can make it home.”

The sheer size of the coronavirus pandemic means that thousands of people may need this kind of therapy. Their numbers already are forcing change on a U.S. medical system that did not see covid-19 coming.

Two weeks ago, when The Washington Post visited Sosa at Burke, 39 of its 156 beds were occupied by covid-19 patients. Another 146 people, former covid-19 patients and others, were waiting to get in. At the peak of the surge in April, Burke housed 90 people infected by the virus, including acute care patients who had nowhere else to go.

Now the hospital is back to focusing on survivors, accepting them even if they are still positive for the coronavirus.

Another New York hospital system, Northwell Health, has opened two small units where patients will be weaned off ventilators outside the ICU and begin physical therapy before they are ready to move to traditional rehabilitation centers.

Sosa, 53, a captain of the dispatch team that sends first responders to emergencies in the Bronx and Manhattan, lost his sense of smell March 26, a telltale sign of covid-19. By April 1, he was hospitalized.

He spent 44 days in the intensive care unit at White Plains Hospital, 19 of them on a ventilator. The virus invaded his lungs, injured his kidneys, inflamed his liver and left him with deep skin wounds on his face and buttocks. His wound nurse is not sure those are bedsores; it’s possible they are caused by covid-19′s attack on blood vessels. He also developed methicillin-resistant Staphylococcus aureus (MRSA), a common, severe hospital-acquired infection.

Sosa spent 44 days in the intensive care unit at White Plains Hospital with covid-19, including 19 days on a ventilator. The disease also caused a stroke. He is relearning how to stand and walk with the help of physical therapist Domenic Facciola. (Jabin Botsford/The Washington Post)

Once a lineman for the Fire Department football team, Sosa lost 32 pounds as his body worked overtime to clear the virus. The nutrition funneled through his feeding tube could not keep up.

When his lungs healed, his sedation ended and his ventilator tube was removed, doctors couldn’t wake him for days. A CT scan showed the disease had allowed large blood clots to travel to both sides of his brain, a “bilateral stroke” in medical terminology. Much of his working memory, which allowed him to organize coins, was badly damaged. His dominant right hand was more severely affected, but his left was weakened as well. He could not walk, stand or get out of bed on his own.

“All the terrible things that could go wrong with covid, he had them all,” said his wife, Blanca Delgado-Sosa, an EMT in New York City.

Blanca Delgado, Sosa’s 85-year-old mother-in-law, died from covid-19 while he was hospitalized. (Family photo)

While Sosa was hospitalized, his entire family developed the disease. His twin 13-year-old children had mild cases. His wife contracted a more severe version, with painful symptoms, but was not hospitalized. His 85-year-old mother-in-law, who lived with the family, quickly died in the same hospital where Sosa was being treated.

The family, worried about the impact on Sosa’s rehabilitation, did not tell him about her death until June 1. The two were very close, devout New York Yankees fans in a sports-mad Yonkers, N.Y., home. Sosa blames himself for his mother-in-law’s death, his wife said.

Since entering the Burke rehab facility May 15, Sosa has come so far, so fast that doctors are unwilling to predict the limits of his progress. Therapists have retaught him how to swallow, use a knife and fork, and comb his hair. His physical endurance, near zero when he arrived, has improved dramatically. He can walk 30 feet with a walker and on June 1 took his first steps without any assistance at all. With each passing day, he requires less oxygen through the cannula in his nose.

“Before I came to Burke, I was bed-bound,” Sosa recalled. “Now I can stand up. Now I can brush my teeth. Now I can take a shower. … It sounds like baby steps. but it was a tremendous step. What we take for granted is bathing ourselves, brushing our teeth, shaving.”

From left: Hugo Sosa; his children, Julia Sosa and Nicholas Sosa; and his wife, Blanca Delgado-Sosa. After Hugo Sosa contracted covid-19, the rest of the family did as well. (Family photo)

Less clear is how his brain will rebound from the twin attacks of stroke and oxygen deprivation. “My husband is used to doing drug calculations [for emergency patients] in his brain,” said Delgado-Sosa. “He was like a whiz with doing that. That was something he would brag about.” As a captain and supervisor, Sosa had to track where paramedics, EMTs and firetrucks were located and where they needed to go.

“I don’t know what capacity he’s coming home in,” Delgado-Sosa said. No date has been set for her husband’s release.

When covid-19 patients began pouring into New York hospitals with frighteningly low levels of oxygen in their blood, front-line caregivers turned to what they knew. First, they sent oxygen from tanks into patients’ lungs via nasal tubes. Patients who did not respond were sent to the ICU, sedated and placed on mechanical ventilators, which, in effect, breathe for them.

A drastic shortage of the devices made them an enduring symbol of the crisis, perhaps as much as the specialized face masks that health-care workers also lacked. New York Gov. Andrew M. Cuomo (D) said city hospitals would need 30,000 ventilators, and he and President Trump sparred publicly over whether that estimate was too high.

Then, physicians began to notice that the lungs of some covid-19 patients responded differently than the lungs of typical patients suffering from “acute respiratory distress syndrome.” Speculating that ventilation was being overused in the pandemic, they began to use the machines more sparingly. They also adopted other, less invasive methods, such as turning patients on their stomachs to help them breathe more easily. The debate over ventilation persists in the medical community.

There is also research evidence that pure oxygen can be corrosive to lungs and other tissue. The air we breathe is only about 20 percent oxygen. And lying in an ICU, unconscious and paralyzed by powerful drugs, is harmful by itself.

Nevertheless, there is widespread agreement that many more people would die of covid-19 without intensive care, ventilation and clinicians familiar with both.

There is no good data on how many people have been placed on ventilators during the pandemic. Studies on the number who survive vary widely. Early reports out of China and elsewhere suggested a mortality rate of about 90 percent, and some U.S. studies put it at about 80 percent.

But more recently, doctors who work extensively with covid-19 patients on ventilators have said 50 percent to 80 percent recover.

Jacqueline Stewart is a psychiatric nurse who survived covid-19 and spent four weeks on a ventilator. She still has marks on her neck from an intravenous line and a tracheotomy. (Jabin Botsford/The Washington Post)

Jacqueline Stewart, a 56-year-old psychiatric nurse, spent four weeks on a ventilator before she was discharged to Burke for rehab. She arrived “deconditioned,” essentially unable to move on her own, with nerve damage in her right arm, probably from her position in the ICU bed. She has a raspy voice from a paralyzed vocal cord and what she calls her “battle scars” — marks on her neck from an intravenous line and a tracheotomy. She vowed never to cover them with makeup.

After weeks of physical therapy, Stewart went home May 29. There are 20 steps up to her front door in Yonkers. Burke would not allow her to leave until she proved she could climb 20 steps in the hospital.

“I’m alive, so everything else is gravy,” Stewart said. “Everything else is a bonus. I’m alive. I can’t believe it.”

Some patients will never recover their full strength, so Burke teaches them ways to manage their exertion. They can dress and shower sitting down, arrange their kitchen to minimize standing and group their tasks to reduce the number of times they go up and down stairs, said Matthew N. Bartels, chairman of Burke’s department of rehabilitation medicine. Quality of life can be largely maintained, he said

“I tell [them], ‘You’ve seen the Energizer Bunny? You’re the other guy,” he said.

LEFT: RIGHT:

Stewart works on her recovery during a physical therapy session with Diana Prattella at Burke. Because she has 20 steps to the front door of her home, she had to prove she could climb 20 steps before she could leave Burke. (Photos by Jabin Botsford/The Washington Post)

Almost no one arrives at Burke with a single problem. Like Sosa, most patients have underlying medical conditions, such as diabetes and heart disease, that leave them more vulnerable to the coronavirus and complicate their rehabilitation.

“They bring all these co-morbidities with them,” said Mooyeon Oh-Park, Burke’s chief medical officer. “They bring that complexity here.”

Janet Wiedhopf, 78, was also discharged, but not to her home. On Friday, she moved to a longer-term rehabilitation facility, a stop on the way home, where she had lived independently before covid-19. For five days, she was intubated aboard the USS Comfort, which docked off Manhattan in April. She arrived at Burke still positive for the coronavirus, though doctors aren’t sure the test result is accurate.

Wiedhopf has high blood pressure that affects the arteries in her lungs and heart. It is difficult to predict the course of her recovery. “We just don’t know what the trajectory is,” said her doctor, Justin Hill, director of the brain injury rehabilitation program at Burke. “We just don’t know. The disease has only been around five months.”

Encouraging signs and photos decorate Sosa’s room as he works on his recovery. (Jabin Botsford/The Washington Post)

Sosa’s parents immigrated to New York from Ecuador. He was born and raised in Manhattan. He and Delgado-Sosa started at the academy on the same day in 1991, then worked their way up the ranks of New York City’s EMS. When the World Trade Center was attacked on Sept. 11, 2001, Sosa triaged casualties a block from the North Tower, then ran for his life when it fell.

“Hugo is a survivor,” his wife said.

Sosa met Cesar Escobar early in his 29-year career. They became partners, racing to emergencies in the Bronx. A Colombian and an Ecuadoran, the two joke they should not get along, Escobar said, but they have become close friends. Their families have vacationed together.

Sosa “is like the mayor of EMS,” Escobar said. “Everybody knows him. Everybody is his best friend. If there’s an event, a sports event, a gathering, a retirement, he and Blanca are there.”

The crowd at White Plains Hospital when Sosa was released gathered by word of mouth, he said. Everyone wanted to be there for Sosa.

At Burke, a 60-acre campus with wide green lawns, there are no crowds. Visitors are still banned from New York hospitals. A physical therapy session two weeks ago was conducted in Sosa’s cramped room, because patients are still housed in the therapy rooms.

Sosa stood with the aid of a walker, as physical therapist Domenic Facciola closely monitored his heart rate and blood pressure. Sosa has been taught to take deep breaths to steady both after the exertion of rising to his feet.

Eight days earlier, “he was only able to stand for 10 seconds,” Facciola said. “Now he’s up to two minutes. This is phenomenal in the PT world after covid.” Slowly, Sosa traversed six feet of floor space four times, relearning the basics of mobility, one step at a time.

“Domenic is teaching me to walk again,” Sosa said. “It’s a reset. It’s a true reset of learning, of getting your strength back. The hospital kept me alive. Burke is putting me back together.”

Only through thousands of repetitions will Sosa’s physical and mental skills return, Oh-Park said. But his caregivers are pleased with the pace of his improvement. Sosa is “really making major gains here in rehab,” said Andrew Abdou, his physician. “We’re really excited about how far he’s going to go.”

Sosa is relearning how to walk, and doctors say they’ve been happy with his progress. “The hospital kept me alive,” Sosa said. “Burke is putting me back together.” (Jabin Botsford/The Washington Post)

Sosa wants to go back to his family, to play golf again and to get back to the dispatch center.

“I love to work. I’m a workaholic,” he said. “I want to get back into it. If I get a full recovery, that’s the first thing I want to do is go through those doors and say, ‘Here, guys, I’m back.’”

Delgado-Sosa wants her husband to retire, to take his pension and enjoy life outside the EMS.

“He survived 9/11. He survived this,” she said. “We don’t know how much more time we have.”