Zei Uwadia went home Thursday after 457 days at Children’s Mercy Hospital.
But it wasn’t the end of her mysterious medical story. It was just one more step in a journey that has made history.
Zei (pronounced “Zay”) gained national attention last year when she became the first Children’s Mercy patient to walk while on extracorporeal membrane oxygenation, or ECMO, a particularly invasive form of life support.
Hundreds of thousands of people watched her walking on videos posted online by The Star, CNN and her mom, Brie Kerschen.
The soft-spoken, iron-willed teen walked the hospital halls one last time on Thursday, tall and smiling, one day before her 17th birthday. Staff members who have become like family lined both sides of her path, applauding and wiping tears.
Zei has become an inspiration to them and to others who only know her from those online videos. But that was never her main goal. Zei was just trying to get better — to recover from the unexplained lung failure that nearly killed her. She was just trying to return to her normal life as a Wichita North High School honors student.
After more than a year in the hospital, her recovery continues. Doctors still don’t know what caused her lungs to fail. She’s no longer on ECMO, the big machine that bypassed her lungs and pulled blood from her body, oxygenated it and pumped it back in. But she is still using a tracheostomy, a tube in her neck to help her breathe, and she’s still tethered to oxygen tanks.
In fact, her doctors weren’t crazy about the idea of her going home. Normally, before patients are discharged, they should rely on machines for only 30 percent of the work of inhaling and exhaling. Zei is still at 40 percent.
But the medical staff has learned that Zei is not a textbook case, and she doesn’t take no for an answer. So they worked with her on a discharge plan that includes returning to Children’s Mercy every three weeks for outpatient care.
“I’m excited to have more freedom,” Zei said this week. “I won’t be confined to this room or the hospital halls. I can go outside. I’ll feel more normal. Not completely normal, but more.”
The family is grateful for the care Zei received at Children’s Mercy, but the family is also ready to go home.
“They’ve saved her life,” Kerschen said, “and I feel like there’s no medication at this time that could supplant the benefits of home for her spirit.”
So on Thursday, Zei and her family piled into their Ford Flex and headed back to Wichita, with a van full of medical equipment following them. Kerschen sat in the back next to Zei to make sure nothing went wrong with her breathing.
They had small liquid oxygen tanks in the car, as well as the larger regular tanks. If all of that failed, Kerschen said she had bags that she could pump manually to keep Zei breathing.
She said this matter-of-factly, in part because she’s a nurse but also because she’s had to become comfortable with her daughter’s mortality over the past year.
She has been the rock to keep Zei strong through the storms, the constant presence making sure Zei could exert some control over her own recovery and not be completely swept up in medical protocols.
Kerschen has spent almost all of the last 456 nights sleeping in Zei’s various hospital rooms, most recently curled up on a small sofa next to her window.
“At home I was never very close to her,” Zei said. “This brought us a lot closer together. I might rely on her too much.”
Zei and Kerschen plan to gradually reduce that reliance now. After about a month of settling in, Zei will start taking classes through a Wichita North home school program until she’s ready to go back to school. She’s already insisted on having her old room back, even though it means going up and down stairs every day. She practiced in physical therapy to show everyone she could do it.
She will be home, but it won’t be quite the same as before. Kerschen is making plans to drill a small hole in the floor of Zei’s room so they can run tubing through it and keep the oxygen tanks on the ground floor.
Kerschen knows that many people are following Zei’s case and cheering her on. She’s almost apologetic that Thursday’s homecoming isn’t a more cut-and-dried happy ending for them. She says she doesn’t begrudge anyone the desire for that.
But the reality is that Zei is still going through a lot. She’s still fragile and, though she was in good spirits Thursday, no one knows what lies ahead for her emotionally. Researchers are only beginning to understand the trauma that can be caused by extended stays in intensive care.
Zei was kept alive on ECMO for a staggering 190 days. Before her, no one at Children’s Mercy had been on it longer than three months.
For more than a year she barely felt the sun, confined either to the hospital itself or the grounds around it. She said her lowest points came when she realized how much the world outside those hospital walls was changing without her.
She turns 17 on Friday.
“I don’t want much of a party or anything,” Zei said. “I just want to be around my family.”
She hasn’t figured out what it all means — her brush with death, her long hospitalization, how she was able to do things few people in the world have done. There are still many questions, physical and metaphysical, that may never be answered.
But she is closer to accepting it.
“There’s nothing I can do about it,” Zei said. “Just be and live as best I can and try to get off of all these machines.”
After 457 days, this much she knows: No matter what happens, you can’t quit.
“Whatever you’re going through,” Zei said, “just keep going through it.”