Now, with determination and a willing attitude, the student from North High School in Wichita, Kansas, is happy to finally be home.
"It helps us a lot to have a goal in mind and use it to motivate you and remind you that you will get better – nothing is permanent," Zei said.
She arrived home Thursday, the day before her 17th birthday.
The mysterious medical journey of Zei began in October 2017, when she was struggling to breathe and out of breath. His lungs were failing, but nobody knew why.
As Zei's symptoms became more alarming, her mother, Brie Kerschen, took her to see an emergency physician. Zei was admitted to the Via Christi St. Francis hospital in Wichita. Then, at Halloween 2017, a medical flight transferred her to Children's Hospital & Mercy of Kansas City.
Before being hospitalized, Zei was taking the antibiotic for an independent kidney infection, his mother said.
"I do not know if we can ever prove it 100%, but we included it in a series of five patients who all had an antibiotic reaction and severe pulmonary insufficiency," said Dr. Jenna Miller , an intensivist pediatrician from Children's Hospital & Mercy who works on the case of Zei. She added that the five cases were specifically Bactrim's reactions.
The hospital submitted the results of the doctors to the publication in a medical journal.
Walking during the maintenance of life
In other words, the ECMO helps to provide oxygen to a patient while leaving his lungs or heart time to rest and heal.
Zei was the first patient in the hospital to sit, stand up and walk while he was under ECMO.
"We only thought that she could get better – and she and her mother believed in it," Miller said. "I think it was very powerful for everyone."
The case of Zei remains unusual, and not all patients treated with ECMO can expect a similar prognosis, but its history has inspired patients and doctors around the world.
She enjoyed ECMO support for 189 days, Miller said. The use of ECMO for more than 100 days is rare.
"What I recognize now is that our situation, as difficult as it was, is not as unique as I would have thought," Kerschen said.
"It's been 456 days that I live in hospital with Zei, and most of the time, this hospital is full of other parents and kids who are experiencing the same thing," she said. "So now, I find that there is a lot of suffering in the world most of the time for most people … It does not mean that you can not be happy at the same time and have periods of time. of joy, which is how we survived. "
"No medicine can replace Zei touching the house"
Seeing his daughter walk was a sign of hope for Kerschen.
"She started doing more exercise, then she started pushing herself harder than she had done, and finally, she started fighting us in her board challenges. She made a plank for a minute and a half on a respiratory resuscitation system – beat her mother, "laughingly said of her daughter beating her with boards.
"It was around September," she said. In early January, she was told that her daughter was about to return home.
"The hospital has saved our lives, no doubt, but for now, no medicine can replace Zei who touches the house and what that will do to his mind," said Kerschen.
Zei's 24-hour care will continue at home.
"She is going home with 48 different drugs," said Kerschen. "So it's intensive care at home."
Although she is no longer on the ECMO machine, she will be connected to a home fan, said Miller, and she will return to the hospital every month for steroid infusions.
According to Miller, the primary goal of Zei's care would be to ensure that she improves to the point of not needing a lung transplant. Then the second goal would be that it improves enough to no longer need a fan.
"The amount of work that everyone has invested, including Zei, to help get to this place is really something we've never done before, and it took a lot of dedication from everyone, "Miller said.
"Everyone is really committed, has been engaged and remains committed to trying to keep her at home," she said. "It's a great company for everyone."
Zei's family has also installed balustrades and other objects in his home to help him navigate the stairs and other spaces.
"It's a very important and festive moment – it's all we expected, but I know for her that it's not the life we've left," Kerschen said.
"You can wear happiness and sadness at the same time"
On Tuesday, Kerschen took Zei in his car for the first time, in anticipation of his return home and the logistics of continuing his care outside the hospital. She then noted that it may not have been the homecoming that Zei had originally photographed.
"We came back and she sat on the bed … and she just said:" I think it may be a little depressing, "Kerschen remembers.
"I just wanted her to know that it was OK and that does not mean that we will not be really happy either, because you can bear both happiness and sadness," she said. she declared. "It's good to be happy even when you go through that."
When Zei arrived home on Thursday, she was delighted not only to meet her two younger siblings, but also to get to know her newly renovated room.
Last year, the Make-A-Wish Foundation contacted Zei and her family to fulfill her wish as she battled the disease. This year, it was decided that the wish would be a makeover of the bedroom.
"This month, dreaming about what his room would look like, choosing things and communicating with them was a distraction," Kerschen said.
Zei now enjoys reading, resting and applying her glamorous makeup – one of her favorite hobbies – in a brand new room.
Zei also plans to continue his studies through an online program at his high school.
At the beginning of her new life at home, she will be remembered as a girl who walked to Children's Hospital Mercy.