Almost every day in Kansas City, a 16-year-old girl does the equivalent of hiking in the thin air around Mount Everest. In the process, she's changing what staff at Children's Mercy Hospital and elsewhere believed was possible.
Zei Uwadia was airlifted to the hospital from Wichita in October with lung failure that, even now, no one can explain.
She's on life support and she's awake, sitting up, eating and talking. She's even walking — the first patient at Children's Mercy to ever do so while on life support.
“She just makes you want to push the boundaries and the limits,” said Debbie Newton, one of the small army of hospital workers caring for Zei.
Zei is on extracorporeal membrane oxygenation, or ECMO.
It's a large machine that pumps blood out of her heart, removes carbon dioxide, adds oxygen and then pumps it back in, allowing her lungs to rest.
“It’s very invasive," said Newton, the director of the hospital's ECMO program. "She has what we call a cannula, which is pretty much like a huge tube that goes in a blood vessel in her neck straight down into her heart."
A lot can go wrong. The tube can become dislodged or bacteria can get in it and cause a fatal infection.
The average time for patients to be on ECMO at Children's Mercy is 21 days. Zei has been on it for more than 120, setting a new record there.
The hospital staff can't stop talking about how inspiring she is. And thanks to YouTube, thousands of people around the world have been able to watch her walk and be inspired as well.
But Zei doesn't have a lot to say about it. She has to save her breath for walking, and for getting better.
"I just want to be home," Zei said.
Brie Kerschen, her mom, can remember quite clearly how anxious Zei was about having her blood drawn during a doctor's visit a few weeks before her hospitalization. Zei has always been afraid of blood and needles.
Zei was having back pain, and the doctors suspected a possible kidney infection, so they sent her home with a prescription for a common antibiotic, Bactrim.
Kerschen, a hospice nurse, now thinks it may have been a bad reaction to that antibiotic that caused Zei's lungs to fail.
Or it might have been a genetic lung condition like the one Zei's younger sister has, though testing hasn't confirmed either one.
For whatever reason, one day Zei was at Wichita North High School, where she was an honors student aiming to graduate early. The next day she was texting her mom from school, telling her to hurry and send someone to come pick her up because she was suddenly feeling very ill.
At the hospital in Wichita she was put on oxygen, but her breathing kept getting worse.
Shortly after she arrived at Children's Mercy, they put her on a ventilator, a machine to inflate her lungs for her. That only lasted a couple of days.
“They sat me down and said, 'She’s not handling the ventilator,'" Kerschen said. "Her lungs are basically blowing holes.'"
The only option was ECMO, to try to buy more time for the doctors to figure out what was going on and fix it.
Kerschen said they assured her it was safe in the short-term, but one said "after a couple weeks the conversations can turn a lot more tragic."
Those initial weeks on ECMO were rough, Kerschen said. Zei was coming off heavy medications that kept her sedated while on the ventilator and she was anxious and uncomfortable.
Kerschen said she wondered why they were keeping her daughter alert.
A doctor pulled her into the hallway and explained that the longer Zei stayed sedated, the lower her chances of recovery became. Her best shot at getting better was to be as awake and mobile as possible.
“My vision for her is for her to be sitting up on the side of the bed, texting her friends, getting on the computer," Kerschen said the doctor told her. "Because I think we’re going to need to be on ECMO for a lot longer than we thought.”
One foot in front of the other
Once the sedatives wore off, it didn't take long for Zei to embrace that vision, then push past it.
It started with food. Newton said most patients on ECMO are fed through a feeding tube to minimize the risks of aspiration and also because sedation wreaks havoc on the digestive system.
Some eat soft things like Popsicles and milkshakes. That wasn't for Zei.
“I remember she could hardly talk because she didn’t have the strength or the breath and it was like, 'What do you want to eat?' And she’s like, 'Tacos,'" Kerschen said. "I’m like, 'Tacos?' She hadn’t eaten in weeks. And she said, 'Carne asada.' And I’m like, 'I don’t think they have carne asada here.'”
Zei got tacos with fajita meat instead and then spent close to an hour sitting on the end of the bed, slowly assembling and eating them.
That inspired a slogan, "Tacos and Tears," that has come to symbolize the unshakeable faith of Zei and her family. It had been a rough day up to that point, but when Kerschen sat down to update Zei's online page that night, she was able to write about the victory as well as the pain.
“God is in the tears, but he’s also in the tacos,” Kerschen said. "He’s not someone you blame (for this). This just is."
Walking came later, but not because Zei didn't want to. It was more than a month before the hospital staff allowed her to try.
As soon as she got to the edge of the bed, she wanted to stand. Then she wanted to take a few steps around the hospital room, crowded with instruments.
Next, she wanted to get out and really walk.
“With Zei, I had told mom we weren’t going to walk her," Newton said.
"We could sit on the side of the bed, we could get into a chair, we could stand, but our ECMO circuit is so large, it’s not really meant to be mobilized. But Zei was so determined. There was one day where she had marched in place for like five minutes and was doing squats and she looked at me and she just said, 'What do I have to do to walk?'”
Walking an ECMO patient was something Newton had considered. There were a few other children's hospitals in the world that were doing it; one of the first was Duke University, which found that walking patients with cystic fibrosis much improved lung transplant outcomes.
Zei was the first patient at Children's Mercy to get a new kind of cannula that was also less prone to displacement. But the hospital was still using large bedside ECMO machines, while people who walk on ECMO are generally using smaller portable mobiles that are easier to control on the go.
Still, Zei was insistent, and Newton and the rest of the hospital staff was game to try. They could stop if anything went wrong. After all, it wasn't like Zei was going to run down the hall.
"When we have the right patient, the motivated patient, we figured it out and we did it safely,” Newton said.
Newton said she got buy-in from everybody at the hospital. Then she amended that to just the clinical team.
“We actually didn’t run it through administration," she said with a laugh. "Looking back, maybe we should have. (But) they typically let us do our thing.”
With six people helping to stabilize the cannula and the cart they put the ECMO machine on, Zei took her first steps. And she just kept on walking.
"Now the joke is she kind of does run; she goes really fast," Newton said. "So we’re working on getting a smaller (cart). They call it a sprinter cart.”
An improving outlook
Zei may not be in the hospital long enough to use that cart.
Doctors still don't know what's wrong with her lungs, but they do know this: she's finally getting better.
For months her mom waited eagerly for Zei's daily X-ray to see if it revealed any of the little trees of healthy lung tissue. For months, there was nothing.
“Every day it was like scratching off a dead lottery ticket,” Kerschen said.
In December the Children's Mercy doctors started thinking a lung transplant might be Zei's only option. They even consulted with colleagues at a children's hospital in St. Louis about getting her on their list.
But Zei didn't want a transplant, and on Dec. 29, she started walking.
About a month later, the daily X-ray revealed a tiny tree.
"I was so excited," Kerschen said.
There have been other signs of returning lung function as well.
The circuits on Zei's ECMO machine have to be replaced regularly, a process that takes anywhere from 30 seconds to two minutes. Her cannula is clamped off while it's happening so the only air she's getting is what her lungs are able to produce on their own.
In the past Zei would have to be sedated during that time because she would lose her breath, get anxious and pass out. Now her lungs can take over during that time.
The doctors have told Kerschen that Zei is "in the last few miles of a marathon." She's cautiously optimistic that she and Zei will be able to go home soon, off ECMO and maybe on external oxygen while her lungs continue to improve.
Kerschen is convinced that getting up and walking was exactly what Zei needed, both for her physical and her mental health. If she had stayed bedridden, she never would have recovered, she said, and Children's Mercy's willingness to deviate from its usual protocols may have saved her daughter's life by letting her show her will to live.
"As a hospice nurse, I understood," Kerschen said. "I was struggling with making sure I wasn’t pushing more than needed to be pushed; that I was being compassionate and accepting end of life if that was what was happening because we didn’t know what was happening.
"So, the walking, to me, has really been her saving grace.”