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They knew it was just a matter of time before they would be responding to COVID-19 in pediatrics.
Some had volunteered in New York when the pandemic started. And when cases first exploded here, most had been shifted to caring for adults in other parts of Utah. They thought they had a pretty good idea of what was coming.
But now it was here: in children.
Kids show up at Primary Children’s Hospital in Salt Lake City coughing so continually that they sound like lifelong smokers. Their skin is sometimes intensely red, sometimes an unnatural purple. And medical alarms beep unnervingly often as they struggle.
“It’s surreal,” said Dr. Jill Sweney, medical director of the pediatric intensive care unit at Primary Children’s. “It’s not like anything we’ve dealt with before.”
She took a deep breath audible over the phone. “I’ve never seen anything like this before.”
Since classes began this fall — without a statewide mask mandate for Utah’s public K-12 students — the hospital has been full of sick kids, a mix of those with the coronavirus and other respiratory illnesses that have spiked. There have been more than 18,000 cases in school-age kids here this school year, and there are so few rooms at the hospital now that staffers are double-bunking, putting a baby’s crib in the same space as a teenager, with minimal walkways in between, to fit in everyone.
They keep a large supply of breathing tubes available, Sweney said, for when they have to put kids on ventilators.
“Their airways are so small, though,” added Jacob Ferrin, a registered nurse there, “that they’re the size of a pen or pencil that you write with. And if they arch their back too far, their breathing tube is out of place. Imagine playing wrestle-the-2-year-old with multiple IVs and a ventilator.”
Primary Children’s has cared for kids from around the Intermountain West who are severely ill, and some who have died. Utah has reported the death of one child under 14, a boy from Salt Lake County, and 16 deaths of young people between 15 and 24.
“We’ve had deaths in previously healthy kids,” Sweney said. “It’s real. It’s happening. And it matters. I need people to understand that.”
As they’ve taken care of the youngest patients of the pandemic, many too young to get vaccinated, these are moments that have stuck with them.
A special test
The little boy had been placed on a ventilator to help him breathe after COVID-19 left him gasping.
He couldn’t talk with the tube down his throat, and he was on two sedatives to help with the pain. Even still, he remained awake and responsive. It was a good sign. It meant his body was fighting.
Nurse Ferrin went in to try a special assessment. He handed the boy a Nerf gun and told him: “Let’s see if you can hit me.”
The boy turned in his hospital bed, a sea of blue blankets around his frame, and put the gun at his hip. He fired.
“He pulls it back and dead center hits me right in the sternum,” Ferrin recalled with a laugh.
The nurse was surprised. So he reloaded the styrofoam dart into the toy gun and challenged the boy again. “OK. Lucky shot. I bet you can’t do that a second time.”
Ferrin, who’s athletic and stands 6 feet, 2 inches tall, started to run and duck out of the way.
Pfft. The next dart landed in the middle of his forehead.
“This tiny kid got a head shot on me while he was on sedatives,” Ferrin chuckled. “He was doing all right.”
The boy recovered, coming off the ventilator and going home shortly after that.
‘What doctors sign up for’
Not all cases end that way.
Dr. Sweney did everything she could think of to save a girl in her care whose body was wrecked by the virus. She was in the room, holding her hand when the girl stopped breathing.
“She didn’t survive,” Sweney said. “I wanted her to so badly. But she just didn’t.”
The doctor remembers crawling into her car afterward to go home. She flicked through radio stations to distract herself. She landed on a talk show. The hosts were saying that COVID-19 wasn’t real.
“They said kids don’t get as sick from it,” Sweney said. “They said this is what doctors sign up for.”
She pulled over and sobbed behind her steering wheel.
A silent connection
Often, when Dave Clegg, a respiratory therapist at Primary Children’s Hospital, walks into patients’ rooms, they can’t speak. They’re intubated, and he’s there to check on how their ventilator is working.
The machine is whirring loudly. And he’s wearing protective gear, too, that pumps oxygen into a clear mask around his face. It’s off-putting, he said — that mixture of noise and silence and him looking like a scary astronaut. “You are just so gowned up,” Clegg said.
So he tries whatever he can to connect with the kids, to make them feel less afraid.
Usually, he pulls out his phone, covered in a Ziploc bag. He shows them pictures and videos of his 9-month-old puppy that looks like Clifford, the gigantic red dog from the children’s books.
“I wasn’t one of those individuals that made it through the pandemic without getting a dog,” Clegg acknowledges with a laugh.
His dog is always doing goofy things, and it makes the kids smile to see it.
If they’re feeling good enough, sometimes they pull out an iPad and show him pictures of their pets at home or their plans for a Halloween costume. It really chokes him up, Clegg said, when he sees the princess dresses.
He looks at the decorations in their room, too, that parents have brought — action figures and unicorn pillows — to get a sense of who the kids are. Sometimes, it’s the only way he gets to learn about them.
With hospital staff stretched thin and some quitting from burnout, there’s often not enough time for such warmth, though.
Registered nurse Sara John in the oncology department was taking care of three patients during one shift: a baby who wasn’t eating, a kid who’d recently had a bone marrow transplant and a boy with both cancer and COVID-19.
John remembers the boy’s dad sitting in the room as his son slept. The dad was crying.
His family had all come down with the virus, and they lost a loved one. The dad was worried he wouldn’t be able to make it to the funeral because he needed to be there with his son. He didn’t know what to do. He needed to talk to someone.
But John couldn’t stay.
“I could listen for brief moments of time,” she said. “But then I had to run to the next room. I didn’t have enough time to hear about this trauma that he had gone through.”
More hospital staffers are leaving, she said, because of the wear of the pandemic.
“We are all too tired,” she said, fighting back tears. “And now there’s fewer of us still. You just feel like you can’t win. You feel like you can’t provide what your patients need. People can only take so much of that.”
Sometimes, young patients are in the hospital alone.
Sweney took care of a teenage boy who never had a visitor. His mom also had COVID-19 and was hospitalized in another state where there was an available bed.
“He was trying to be brave,” the doctor said, “but he’s still a kid.”
It’s hard for staffers to be in the rooms because of all the gear they have to put on to enter. Sweney said she’d try, when she could, to talk to the boy and give him updates about his mom. She brought him video games to play when he was in the room by himself and a phone charger so he could text his friends.
Another kid, just a baby, Sweney said, had the virus and also had both parents in another hospital with COVID-19.
Even with tight restrictions, parents are allowed to be at the hospital when their kid has the virus. They just can’t leave the room frequently, to avoid spreading the disease.
That means moms and dads hole up in the room for days, sometimes weeks.
Ferrin said they often end up pulling a recliner into the bathroom — the only place that gets dark at night and where the sound of the medical machines beeping is a little quieter — to try to get a tiny bit of sleep.
He advises parents to not stay there for longer than 16 hours, which is as long as a nurse can be in the hospital without a break. But most ignore him. He says after too long, they start to have “ICU delirium,” and the staff ends up needing to care for the parent and the child.
“The ICU,” Ferrin said, “is a really hard place to be a for a long time.”
Staffers try to get kids whatever toys they want to help them feel better while they’re stuck in the hospital. They have bikes to ride, and nurses will paint fingernails.
John had one boy with the coronavirus who had also just been through chemotherapy. He wanted magnetic tiles to build houses.
It was 11 p.m., and she remembers searching everywhere. She couldn’t get into the main playroom of the hospital because it was closed. But she looked in every cupboard in the oncology unit and those around her.
She finally stumbled on them and wiped down every single tile with a Clorox wipe so he could play.
When she brought them back, the little boy invited her to construct towers with him. He kept falling asleep as he was building.
Ferrin was taking care of a little girl who had multisystem inflammatory syndrome in children, or MIS-C, an illness that strikes some kids after they’ve had COVID-19.
The girl was about 5 or 6 years old, and she was angry. She was in pain. She didn’t want to be in the ICU. And she let Ferrin know that.
“She was just so mad that she didn’t want to talk to me,” Ferrin said. “She was sitting in her bed and scowling with her arms crossed.”
The girl was being treated with helium and oxygen, which helps with airflow as her arteries swelled. The treatment also gives young patients a high-sounding voice, like they’ve been sucking on a balloon.
Ferrin decided he was going to try to make her smile through it.
He found some glow sticks at the nurses station and brought them into her room. Handing them over, he instructed the girl: “Hit me in the arm as hard as you can.”
She grabbed a stick and just starting going whack, whack, whack. It lit up in bright neon color. The girl started laughing.
“She starts giggling in this high-pitch giggle because of the helium,” he said. “And that made her laugh harder when she sounded like a chipmunk.”
When a child is intubated, sometimes it’s weeks or even months before a parent gets to hear the youngster’s voice again.
Clegg had a patient who’d been on a ventilator for a long time and hadn’t been able to speak. He told the girl to think about what she wanted her first words to be when she finally had her breathing tube taken out.
She said: “Ouch!”
Dealing with death
Sometimes, though, Clegg never gets to hear a kid speak. He’s intubated some who have died from COVID-19.
“You wonder what their personality is like, what their voice sounds like,” he said. “When they end up passing away, it tears you apart.”
When Clegg loses a patient, he tries to find an empty space and give himself time to grieve. He goes to the hospital’s chapel or a stairwell. He sits with the pain. He cries.
He allows himself to think about taking a vacation to get away from it. He’s only had one since the pandemic began; it was for four days. Then, he reflects on the Primary Children’s motto, which is painted above the hospital entrance: “The child first and always.”
And he goes back in to help the next patient.
Painful to touch
The teenage boy had MIS-C so bad that his skin was bright red, almost neon, from the inflammation inside his body.
When Ferrin would touch the boy to roll him onto his side, the boy would cry out in pain. Tears rolled down his cheeks, but it hurt him too much to pull up his arm to wipe them away.
“Every single turn I made,” Ferrin said, “he’d just scream out.”
The nurse couldn’t give the boy any more medication or it would have required him to be on a ventilator.
At one point, the boy looked at Ferrin. His eyes were bloodshot. He asked, “Why is this happening to me?”
Ferrin responded, “I wish I could tell you.”
Their own kids
It’s hard for Sweney not to think about her own children when she’s at the hospital.
Sometimes she sees an 11-year-old come in on a gurney unable to breathe, and she worries about her 11-year-old at home. She wonders how her older daughter is doing at high school, where she was pushed in the hallway because she was wearing a mask. Sweney hopes she doesn’t get bullied enough that she takes it off.
She can’t picture how she’d be able to survive if she lost one of them. She prays for the families she’s met who have had kids die from COVID-19.
“They’re not just numbers,” the doctor said, crying on the phone. “Those kids were somebody’s. Those kids had friends. Those kids were going to grow up to be something.”
“Every one of them, there’s now a family without a kid.”
Sweney cringes around 1 p.m. every day when she knows the state will release the new death totals. And she now dreads holidays, knowing that a spike in cases will follow.
John has two daughters, a 4-year-old and a 6-year-old. Her husband is also a nurse. Both worry about bringing the virus home to them after taking care of other sick kids who could just as easily be their own.
Holding onto happy
John holds onto the moments when a kid recovers. It’s the only thing, she said, that’s getting her through.
“When you get those wins, they do stick with you,” she said. “Right now, we’re having way more losses, and it’s just so hard.”
She thinks of a boy who had COVID-19 on her floor who was confined to his room. Patients have to be symptom-free before they can come outside. The boy had been very sick, and then, turned the corner.
John relished removing the signs from his door that stopped staffers from going in without protective gear. And she loved getting to tell him that he could move around now.
The boy walked out with his IV pole rolling behind him and started waving to staffers in every hallway. For the first time in a long time, John smiled. She was even happier, she thought, than the boy.