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US 'I'm scared. Are you scared?': A Michigan mom's harrowing story of leaving her autistic son to fight COVID-19 alone in the hospital

00:15  30 november  2020
00:15  30 november  2020 Source:   usatoday.com

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In the emergency room of Sparrow Hospital in Lansing, Michigan, Pam Warfle begged for compassion.

Her autistic son had COVID-19 and needed to be hospitalized, though the staff informed her she couldn't stay.

"'You don't understand. You're going to have to carry me out of here. He cannot communicate,'" Warfle recalled telling the doctors and nurses as she pleaded to stay. " 'You can put me in bubble wrap. I'll stay in a corner.' "

a man wearing glasses and looking at the camera: Pam Warfle stands with her son Jonathan Warfle at their home in Perry on Friday, Nov. 20, 2020. Warfle has twice faced the unthinkable due to COVID-19. She had to say goodbye to her autistic son in the ER as he was hospitalized with the virus. Despite all the begging and crying to be allowed to stay with him, she couldn't be at his side as he fought for his life. With the help of plasma, her son came home in six days. But then the same nightmare repeated itself: her 82-year-old mother also had to be hospitalized with COVID-19. She is now having to advocate on the outside, only her mother was in worse shape. © Ryan Garza, Detroit Free Press Pam Warfle stands with her son Jonathan Warfle at their home in Perry on Friday, Nov. 20, 2020. Warfle has twice faced the unthinkable due to COVID-19. She had to say goodbye to her autistic son in the ER as he was hospitalized with the virus. Despite all the begging and crying to be allowed to stay with him, she couldn't be at his side as he fought for his life. With the help of plasma, her son came home in six days. But then the same nightmare repeated itself: her 82-year-old mother also had to be hospitalized with COVID-19. She is now having to advocate on the outside, only her mother was in worse shape.

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But the hospital wouldn't bend: "We cannot do it," they said.

In that moment, her 21-year-old son Jonathan, who has always lived with his parents and attends life skills classes, became her hero.

"He looked at me and said, 'Mom, It'll be OK,' " Warfle recalled. "I told him, 'I'm scared. Are you scared?' He said, 'Mom, I gotta get better.' "

With an ache in her heart and tears in her eyes, she gave him a hug and a kiss, slid his tray of water and ice chips over to him, and left.

Three days later, Warfle, was back at the same ER, this time with her 83-year-old mother.

Leona Smith — a feisty, retired factory worker who hadn't been hospitalized since her knee replacement two decades ago — also had COVID-19 and was struggling to breathe. She lives with her daughter's family in Perry, and presumably picked up the virus from her grandson, Warfle said.

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However, unlike her grandson, who has no preexisting conditions, Smith has COPD (chronic obstructive pulmonary disease) — an inflammatory lung disease that causes obstructed airflow from the lungs.

Warfle knew what she was in for. As with her son, she would have to leave her mom at the hospital, and advocate from the outside.

"She did not want to go in," Warfle recalled of her mother. "She had convinced me she was just tired. She said, 'Pam, I just need to sleep. We can go in the morning.' "

But Warfle didn't take any chances. She packed her mother's bags and her mini oxygen tank, got her in the car and had her 20-year-old daughter, Arena, drive them to the hospital.

It was about 7 p.m. Nov. 9 when they pulled up to the ER with Leona. Warfle carefully maneuvered her mother out of the car, held her up and the two walked arm-in-arm for about 40 feet when a security guard spotted them and asked whether they needed a wheelchair.

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"She has COVID," Warfle told the guard.

"'You won't be able to come in ma'am,'" she recalled him telling her.

a group of people in a park: Pam Warfle, center, sits with her son Jonathan Warfle and husband Mark Warfle at their Michigan home this month. She has twice faced the unthinkable due to COVID-19, leaving both her son and then her 83-year-old mother at the hospital. © Ryan Garza, Detroit Free Press Pam Warfle, center, sits with her son Jonathan Warfle and husband Mark Warfle at their Michigan home this month. She has twice faced the unthinkable due to COVID-19, leaving both her son and then her 83-year-old mother at the hospital.

With Jonathan, she at least got to go into the ER. This time, she had to leave her mom at the door. As hospital staff wheeled her inside the building, Warfle hollered from afar: "She has her medicine list in her front pocket, with my phone number. And her oxygen tank is only half full."

As she got back in the car, pain and sadness set in.

Her Jonathan was still inside the hospital building, alone, where nurses were struggling to draw his blood, poking him so many times that they had to call his mom in the middle of the night to keep him calm and talk him through it. He was fighting a virus that had crept into his lungs and wiped him out so badly that he could barely talk when his mom phoned.

"It was so hard because all I could do was think of Jonathan," Warfle said. "I'm so close to him, and I had to turn around and leave him again."

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For three weeks, the virus had gripped Warfle in fear and anxiety. She sobbed. She prayed. She broke down.

"There were times in the middle of the night of me crying out loud in my front yard," she said, "crying out to God and asking for help, and praying that his will be done."

'Stay away from grandma'

The Warfles live in a 3,000-square-foot colonial — plenty of room to socially distance. Mom, dad and Jonathan live on the first and second floor. Grandma lives in a mother-in-law-style apartment in the basement. Jonathan's younger sister, 20-year-old Arena, lives at Grand Valley State University.

Still, the novel coronavirus managed to find its way into the bodies of three family members.

Jonathan was the first to get it. It was about 4 p.m. Oct. 30 and he called his mom at work to tell her he wasn't feeling good.

"I said, 'I'll be there in 10 minutes. Stay away from Grandma. Go downstairs and get the thermometer, '" Warfle recalled.

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By downstairs, she meant the main floor.

But Jonathan went downstairs to the basement, where his grandmother lives. When Leona Smith learned that her grandson wasn't feeling well, she went upstairs to check his temperature with an ear thermometer.

At about the same time, Warfle got home from work and saw her mom on the main floor.

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"I walk in the door and she's standing there. I said, 'What are you doing?' She said, 'I'm checking his temperature. He doesn't feel good,'" Warfle recalled.

a person standing in a field: Pam Warfle sits outside of her home in Perry, Michigan, on Nov. 20, 2020. © Ryan Garza, Detroit Free Press Pam Warfle sits outside of her home in Perry, Michigan, on Nov. 20, 2020.

Jonathan had a low-grade fever of 100 degrees and a sore throat. He was quarantined to his bedroom and everyone else started wearing masks. The next day, his mom took him to a clinic and had him tested for coronavirus. It was a rapid test. The results came back in two hours.

Jonathan was positive.

It was Oct. 31. A week earlier the family had gone to a cider mill together — everyone wore masks — and her daughter had come home from college for her birthday. She and her mom had gone shopping together at Great Lakes Crossing and spent three days together.

So after Jonathan tested positive, Warfle called her daughter at college and told her to get tested, which she did, that same day.

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On Nov. 1, Arena Warfle's results came back positive, though her symptoms were mild.

By Nov. 4, Jonathan's symptoms became worse. It was getting difficult for him to breathe. The family doctor ordered an X-ray and when the results came in, she advised to get him to the ER right away.

He couldn't take a deep breath. He had developed a COVID-pneumonia. Warfle feared the worst.

"Oh my God, he's going to get put on a vent," she thought.

She stayed with him until he was admitted to the COVID-19 floor.

"I was in tears," she recalled. "He said, 'It's OK, mom. It'll only be a day or two."

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Remdesivir and plasma therapy

During his hospital stay, Jonathan was placed on supplemental oxygen and was given steroids, and remdesivir — the same antiviral drug that President Donald Trump had. He went in on a Wednesday. On Sunday, he started to go downhill.

He could barely talk and was getting weaker. At that point, convalescent plasma — collected blood plasma from patients who have recovered from COVID-19 and have developed antibodies — was ordered. Within a few days, he started to get better — though his family can't with all certainty credit the plasma.

His mom was calling the hospital constantly and getting regular updates from the doctors. The nurses were wonderful, she said, noting one with a psychological background was called in to help with her son.

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After days and nights of praying and crying, Warfle finally heard her son's voice sound stronger on the phone.

"I miss you," he told his parents over the phone. "I can't wait to see you."

After a six-day hospital stay, with an army of friends and family praying for him daily, Jonathan returned home on Nov. 12. He was shaky and weak, though he had mustered enough strength to eat Kentucky Fried Chicken and mashed potatoes. He had a few bites and went back to bed.

"I'm thankful for my family," Jonathan said in a Friday interview with the Free Press. He said that he had never been that sick before in his life, and that it feels good to be "just chilling" now, drawing, playing games and playing with his two poodles, Trixie and Jazzie.

a close up of a woman wearing glasses: Pam Warfle begged to stay with her autistic son, who was infected with COVID-19, but hospital rules prevented it. She was forced to advocate for him from the outside. © Ryan Garza, Detroit Free Press Pam Warfle begged to stay with her autistic son, who was infected with COVID-19, but hospital rules prevented it. She was forced to advocate for him from the outside.

Meanwhile, with Jonathan home and recovering, Warfle shifted her attention to her mom, who was struggling in the hospital. She was confused, weak and often unable to talk or hang up the phone. She started having panic attacks, and only her daughter could calm her down.

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"I had to talk her through breathing on the phone," Warfle remembers. "I called her one time and she answered the phone, 'Nurse, nurse, get in here. I can't breathe.' "

Some days were worse than others. One night, she remembers a nurse telling her that her mother appeared flat, as if she were giving up, which made her call the hospital that much more.

Warfle advocated aggressively for her mom, fearing she may not get the same treatment as her son because of her age. For example, her son got plasma right away, but she had to push for her mom to get it, which she ultimately did receive.

Plasma the 'Hail Mary' option

From the beginning of the pandemic, medical experts have opined that people of any age with certain preexisting conditions are at increased risk of severe illness if they contract COVID-19. Initially, that list was limited to problems like diabetes, high blood pressure, heart disease, COPD, obesity and cancer, though over time the list has grown substantially to include more than 30 preexisting conditions.

On Nov. 2, the Centers for Disease Control and Prevention (CDC) added pregnancy to the list, along with sickle cell disease and chronic kidney disease to the conditions that might increase the risk of severe illness among children.

a man standing in front of a window: Pam Warfle stands with her son Jonathan Warfle, who is recovering from a bout of COVID-19. © Ryan Garza, Detroit Free Press Pam Warfle stands with her son Jonathan Warfle, who is recovering from a bout of COVID-19.

Elderly people have been especially hard hit. According to the CDC, more than 95% of COVID-19 deaths involve people older than 60 years, and more than 50% involve those 80 years or older.

“We’re more worried about the older people. We know older people are sicker. They don’t do as well (with COVID-19). And we are very seriously trying to keep older people safe and healthy,” said Dr. Matthew Sims, director of infectious disease research at Beaumont Hospital.

Sims said that elderly people who are hospitalized with COVID-19 “get the same treatments” as younger patients, stressing: “We don’t hold back any treatments because they’re older.”

The first line of defense is to give them supplemental oxygen. The second step is steroids. “The one thing we know more than anything that helps is steroids,” Sims said.

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Then there’s the antiviral medication known as remdesevir, which Sims says is used for hospitalized patients who need oxygen.

“It’s the only approved drug we have right now,” Sims said of remdesevir, noting there’s much controversy over it. “WHO says don’t use it, even though the data that got it FDA-approved shows that it shortens the duration.”

But it doesn’t necessarily save lives, he added, making it “a big controversy right now.”

Then there’s the centuries-old medical treatment known as plasma, which Sims referred to as the “Hail Mary” for people on ventilators.

“Plasma has been used for over hundreds of years, but there’s little solid data to show that it really works,” Sims said. “But it made sense to try it for COVID.”

Pam Warfle holds a photo of her mother Leona Smith from 2004. © Ryan Garza, Detroit Free Press Pam Warfle holds a photo of her mother Leona Smith from 2004.

On Aug. 23, the Food and Drug Administration authorized the use of convalescent plasma for the treatment of hospitalized patients with COVID-19.

According to Sims, the medical profession recommends using plasma on patients within three days of their symptoms.

“It might help if you give it early, like within the first three days of having symptoms, and if it has high amounts of antibodies in it,” Sims said. “With plasma, there has not been any real harm, but the issue is it’s a limited resource. There’s a real huge shortage of plasma right now.”

And there’s no solid data to confirm that it works, Sims said, who cautions people against relying on social media posts about whether plasma is effective or not.

"There’s a lot of social media out there — 'I got plasma and I was on the vent, and then I got off the vent.' That’s anecdotal," Sims said. "This is what I tell people. It might work if you give it early enough and it has high levels of antibody."

'They better take this seriously'

In the end the hospital staff came through big time for Leona Smith, her daughter said. Smith went from barely being able to talk one day, to being back to her old feisty self the next. It was a phone call Warfle will never forget.

"I said, 'Mom, hi, it's Pam, how are you?' " Warfle recalled. "And she said, 'Hi honey I'm good!' "

Warfle burst into tears as her mother continued: "I want to get out of here. This is awful."

On the eve of Thanksgiving, after 16 days in the hospital, Leona Smith was deemed healthy enough to be released. Her daughter picked her up and brought her home, where her aspiring-nurse granddaughter took over her care.

"It's the worst thing I ever went through in my life," Leona Smith said of COVID-19 in a Friday interview. "It was just horrible. I laid … up there in the hospital praying that I would die. That's how bad it was. But God wasn't ready for me, I guess."

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Smith remembers not being able to get comfortable in her hospital bed, feeling achy all over and feeling foggy. She credits her family for helping pull her through, calling her daughter "wonderful," and the nurses and doctors who cared for her.

"I felt sorry for them," she said of the hospital staff. "They were run ragged up there."

Meanwhile, Smith wants to encourage others who have the virus not to give up, no matter how dire the circumstances. She also wants to send the world a message about COVID-19.

"They better take it seriously," she said. "Some (260,000) people have died from this."

Before her family was stricken with COVID-19, Warfle said she didn't take it as seriously as she does now. She and her family wore their masks and practiced social distancing, but weren't all that concerned about it.

"I wanted to respect it, but I thought it was overblown," Warfle said. "I thought that most people didn't have a problem with it."

Not anymore.

"I have repeatedly said to people, 'I am not just eating humble pie, but the biggest humble pie ever,' " said Warfle, who hopes others will learn from her experience. "Take it seriously. ... My mom is nothing short of a miracle."

Her daughter also had what she called a "reality check" about COVID-19.

"I knew it was real before, but it's much more real to me now," said Arena Warfle, who was skeptical about the virus before it hit her family. "I thought there was a chance that it might be political, that it might go away after the election."

And then it came for her family.

"It was a reality check," Arena Warfle said. "It's not something that's going away."

Tresa Baldas is an award-winning courts and legal issues reporter and was named the 2020 Richard Milliman "Michigan" Journalist of the Year by the Michigan Press Association. Contact her at tbaldas@freepress.com. Follow her on Twitter @Tbaldas.

This article originally appeared on Detroit Free Press: 'I'm scared. Are you scared?': A Michigan mom's harrowing story of leaving her autistic son to fight COVID-19 alone in the hospital

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