X-ray pictures show that COVID has shot into Trevor Henlsey’s lungs, and the 7th grader is still struggling to breathe after nine days of maximal oxygen in the pediatric intensive care unit in Missouri in early November.
“The thing you never want to hear your kid say is ‘I feel like I’m dying,'” the boy’s mother, Deb Hensley later told The Daily Beast.
For the next three months, her sweet son will wage a fierce battle for his life. Even with the efforts of an outstanding medical team, his battle will come to an end as grim as thousands of other COVID cases in the ICU.
Deb recalls: “There were times of despair.
But Trevor never lost hope.
“Just when we thought we were down and down, he would do something and prove us wrong, get stronger and keep us going,” Deb said.
Trevor’s family are vaccine advocates and his mother and father have contracted the disease, as have his older sister, Autumn. They decided to keep Trevor for a few months because at 12 he was the minimum age to be approved and had a pre-existing condition called phenylketonuria that made it difficult to metabolize proteins.
In October, Deb caught COVID. The rest of the family also fell ill, but everyone recovered – except for Trevor. His parents took him to Children’s Mercy Hospital in Kansas City when oxygen levels in his fingertips dropped to a dangerous 85.
At 9 a.m. on November 9, Trevor was sedated and intubated. Doctors warned the Hensleys that if Trevor didn’t improve quickly, they would have to try an even more invasive procedure.
“They said, ‘You know, we’ll give him two hours if he answers,'” Deb recalls.
The ventilator may also be trying to pump air into the concrete. Trevor’s blood oxygen levels remained dangerously low after the scheduled time and he was rushed into the operating room.
A surgeon inserted a large tube, or catheter, through Trevor’s neck into his jugular vein and down into his heart. His blood started running through an artificial lung that had removed carbon dioxide and infused oxygen into it in a process known as extracorporeal membrane oxygenation, or ECMO.
In a room in the pediatric intensive care unit, Trevor is a tiny figure surrounded by countless tubes and machines. A team led by Dr. Jenna Miller has begun what they call an “ECMO run” in the hope of giving Trevor’s lungs time to heal. The doctors, nurses, and respiratory therapists worked around the clock, constantly adjusting equipment and checking X-rays and ultrasounds.
Miller later told The Daily Beast: “It was difficult to start getting him to the right facility and the right location with that large catheter and find the right amount of sedation.
After several days, the team reduced the dose of sedation and Trevor regained consciousness for the first time since being intubated. Doctors explain that children often become agitated when they first wake up and are placed in safety seats so they don’t pop the catheter. But Trevor remained mostly at peace, though now he could see blood flowing in and out of a large tube protruding from his neck.
“He woke up and was very calm,” Deb recalls. “He never pulled it, anything. He was just like, “Okay, we’ve got this.”
Doctors initially told Deb that Trevor would likely stay in ECMO for up to 10 days. But his chest X-ray pictures continued to be white, with no indication that they were drawing in the air.
“We got through that first week and he didn’t improve,” Deb said. “So we just took it day by day. It was a lot of waiting and hoping.”
Around Thanksgiving, the scans showed that a large blood clot had formed near where the catheter entered Trevor’s heart.
“It’s a big debate about whether we go in after a blood clot or sit and wait and hope it doesn’t work,” Deb said. “It’s very scary. You don’t know if it will stay there or if it will block everything or if it will go into the machine. ”
Parents were able to view the scans on a computer monitor in the room. They were told that if they decided to remove the clot, the surgeon would have only one minute to reattach the tube.
“We watched it for about 12 hours and they gave him a blood thinner and it started to shrink a little bit,” Deb said. “So the decision was to leave it… About every four days, we’d check if it resized, it moved or whatever.”
Blood thinners, used to prevent other blood clots from forming, leading to bleeding.
“Trevor bleeds from everywhere: the lungs, the stomach, the bladder, the ECMO site,” says Miller. “So managing all of that was tough and took weeks.”
He also had a bacterial infection.
Deb recalls: “The doctor told me, ‘ECMO is a series of complications.
After six weeks, Trevor was still not improving, so Miller decided to try something that had helped adults with COVID, but not to try with a pediatric ECMO patient. Miller met with her team to figure out how they could start “stalking” Trevor without popping the catheter.
Miller recalls: “We said, ‘What do we have to lose? “.
Blankets are piled up on Trevor’s chest as a cushion as at least seven party members slowly roll him over.
“It takes seven to eight people to do it safely,” says Miller.
Trevor can’t speak because the ventilator is still attached to the tracheostomy, but he and the ECMO team have developed hand signals.
“He would give us things like, ‘Okay, slow down’ or ‘I’m fine, keep going,'” Miller said.
The gamble was successful when an X-ray showed a small dark area in the upper lobe of Trevor’s right lung.
“You can start to see the air there, where it’s not,” says Miller.
But that’s just a start. The ECMO run continued through Christmas and on Trevors’ 13th birthday on December 28. His gifts included a virtual reality headset and he started playing Beat Saber from his bed.
Someone from the hospital’s children’s services office suggested to Trevor that he could get a service dog to visit. He writes the answer on the whiteboard.
“No, I want my dog.”
On January 7, Deb distracts Trevor while his father Dennis places a surprise on his bed. Trevor looked over to see that his Boston terrier, Callie, had been authorized for a two-hour visit.
Dennis later said: “He reached out with the biggest smile and biggest blue eyes you’ll ever see.
Along with monitoring, the team began transferring Trevor to a heart-support chair, which started out as flat as a table and then tilted upwards.
“Once they started putting him in that chair, things immediately started to get better,” Dennis recalls. “You can start to see improvements.”
Deb happened to be at home with a cold on January 16, when the team took the latest X-ray.
“His dad called me and was like, you know, so excited,” she recalls. “He was like, ‘You have to see the text message I just sent you,’ and I opened it and I saw this X-ray picture.”
Where there used to be a white cloud, she could see all of Trevor’s lungs, even his diaphragm.
“It was wonderful,” said the mother.
At times, the team rolled the heart chair out of the room along with the ECMO machine. Up to 11 paramedics will participate in a march down the hallway, making sure the lines are secured, testing and regulating his oxygen levels.
“He would actually wave at people as he passed,” Deb recalls. “It’s like a parade.”
This is a smiling champion in the fight against a virus that many say does not affect children. He’s as brave and inspiring as anyone honored with New York’s Hero Canyons tape.
“There were people at the bottom… hadn’t even seen Trevor, but you know, they heard a lot about him,” Dennis recalls. “They go, ‘Oh, look, that’s Trevor – everyone, wave!'”
He’s undergoing physical therapy, and a January 18 video captured the encouraging voices of paramedics as he lifts child-sized weights.
“Good job… See, you get it… Excellent, man… Gym video, here we go!”
On January 23, after 73 days on ECMO, Trevor’s catheter was removed.
“He was very nervous,” Deb said. “Then he got really excited.”
With the tube no longer in his neck, he was transported back to a room that suddenly seemed spacious without the ECMO equipment. He asked for a bed so he could greet people as they passed through the hallway.
“I would say he is the most caring person you will ever meet in your life,” Dennis said. “If he knew you and he liked you, you wouldn’t walk away without a hug first. I don’t think he’s met anyone he hasn’t liked. ”
Doctors told the parents that Trevor would be in the ICU for two more months.
“He is currently working on getting up in bed without assistance and starting to stand up on his own,” Deb said.
During his time in the hospital, Trevor dreamed of his horse, painted brown and white named Jesse.
“He loves his horse,” Dennis said. “If there’s some way I can get that horse to the hospital for it, I’ll do it.”
His medical team is also preparing for him to be reunited with Jesse – outside the hospital.
“I think it’s something they can’t wait to see him do,” his father said. “They want to see him back on that horse.”
