Teen spearheads toy drive for children’s hospital that saved her life

MARENGO — After nearly dying in April from an undiagnosed autoimmune disease, 13-year-old Payten Stout is partnering with the Iowa Valley Junior High Student Council to collect toys for children at the hospital that saved her life.

While Payten was in the Stead Family Children’s Hospital in Iowa City — in a coma for more than a week of a 37-day stay — her mother, Rhonda Goodman, organized Payten’s Pack, a group of family, friends and supporters who followed Payten’s progress.

The Payten’s Pack Facebook page, which has 195 members, brings awareness to Payten’s disease — ANCA-associated vasculitis — and provides a way for Payten to give back to the facility that kept her alive.

“Bingo’s a hot thing at the hospital for the kids,” said Goodman. Payten thought about having a toy drive for the hospital.

Or a blood drive. “She’s used a lot of their bank,” said Goodman.

Meanwhile, the Iowa Valley Junior High Student Council was looking for a service project for the holidays, said sponsor Erin Pieper, and they had a connection to the Children’s Hospital in Iowa City in Payten.

So the groups joined resources and are collecting toys through Dec. 5.

Boxes for the toy donations are located at Iowa Valley Elementary and Junior/Senior High School, at Brewed and Bronzed on Court Avenue in Marengo, at Blackwall Fitness on the Marengo square and at River Valley Family Chiropractic, 116 E. Washington St. in Marengo.

The toys should be new and in their original packaging. They must be unscented and free of dust, animal hair and smoke, Goodman said.

Payten’s medical journey

At the end of her seventh grade year, Payten was having symptoms of seasonal allergies. “I’d get bloody noses,” Payten said, and she developed an irritating cough.

She also noticed that she was out of breath just walking up to a second-floor classroom and while in PE class. “It was really weird,” Payten said.

Her mother had also had an upper respiratory infection, but medication helped her. “I never fully got better,” said Payten.

Goodman didn’t understand that Payten’s breathing problem didn’t feel the same as a normal cold. “It’s different,” Payten told her mother. “It’s like an elephant is sitting on my chest.”

Payten was confirmed at church Sunday, April 13, and she looked ghostly pale, her mother said.

About 2 a.m. Tuesday, April 15, Payten woke her mother when she slipped into her bed. It was Goodman’s 40th birthday, and she wanted to sleep in, she said. She gave Payten medication and sent her back to bed.

At 7 a.m., Payten said she felt good, but she didn’t want to go to school. Her mother and stepfather, Brian Mattison, told Payten she could stay home and rest but she couldn’t watch television or use her phone.

They didn’t want to encourage skipping school if she weren’t really ill, Goodman said.

Goodman went to an appointment, and when she returned home, she went to Payten’s room to check on the girl — but she couldn’t get in.

The door’s locked, Goodman told her daughter. No, said Payten, it’s not.

“I was sitting in front of the door,” said Payten, but she didn’t know it. She thought she was in bed.

Goodman knew something was wrong when she finally got the door opened. “She looked weird. She wasn’t making any sense,” said Goodman. “Her breathing was a little weird.”

Goodman told Payten she was going to the doctor. Payten was adamant that she wasn’t going. She didn’t want to get a shot. The resistance was uncharacteristic, and Goodman was told later that it was because of the lack of oxygen to Payten’s brain.

“I threatened to call 911,” said Goodman. Instead, she called Mattison at work, and he got Payten into the car. They took Payten to the emergency room at Mercy Cedar Rapids.

“I don’t remember how I got in the wheelchair,” said Payten. “I blacked out.”

In the ER

In the ER, the staff checked Payten’s vitals. Her oxygen level was at 53%, said Goodman, and she was rushed into a trauma room.

Payten had hemorrhaged in her lungs, said Goodman. A social worker asked if the family wanted a chaplain.

Goodman began blaming herself. “Mom guilt,” she called it. Why hadn’t she realized how sick Payten was? Why hadn’t she called 911?

Payten didn’t like the oxygen mask, she said, but when she took it off, her oxygen level fell.

At times her oxygen was as low as 21%, Goodman said. “They were bagging her.”

Doctors said Payten needed to be transferred to the children’s hospital in Iowa City. They requested an ambulance, but Payten’s condition continued to decline, and the medical helicopter was called in.

Payten was excited when she heard that she’d be taking a helicopter ride, she said, but she was also frightened by what was happening to her. She asked her mother, “Am I going to die?”

Goodman told her not to even say the word.

The helicopter ride was intense, said Goodman. The staff spent the entire eight-minute flight trying to keep Payten alive.

Payten was unconscious and remained in a coma for several days.

In Iowa City

A team was waiting for Payten in the pediatric intensive care unit at Stead Family Children’s Hospital. In addition to the bleeding in her lungs, Payten had lost most of her kidney function and was going into shock, says an article published by Iowa Health Care in August.

Brooke Johnson, PICU nurse, had finished her shift, but she volunteered to stay because the night shift was going to be short handed. Johnson was one of the first nurses to take care of Payten when she reached Iowa City, said Goodman.

Johnson squeezed bag after bag of blood into Payten’s body after she arrived at the PICU, said Goodman. Doctors administered steroids and other medications to stabilize Payten’s organs while they tried to diagnose her illness.

Then came another blow. Payten’s lungs were failing. Doctors told Goodman and Mattison that Payten needed ECMO, said Goodman.

Extracorporeal membrane oxygenation is an advanced forms of life support available to patients with acute failure of the cardiac and respiratory systems. Blood is routed to machines outside the body where it is cleaned and oxygenated and sent back into the body.

ECMO bypasses the lungs, giving them a rest.

The next day, according to the Iowa Health Care article, specialists determined that Payten had anti-neutrophil cytoplasmic antibody associated vasculitis, a rare autoimmune disease that inflames and damages blood vessels causing leakage and low blood supply.

ANCA-associated vasculitis affects all organ systems but targets sinuses, lungs and kidneys. It was most likely triggered by Payten’s earlier viral infection, doctors said.

While Payten was in a coma, the palliative care team asked what Goodman wanted Payten to know when she woke up. How resilient and brave she is, said Goodman, “and how much I love her.”

“To know Payten is to love Payten,” said Goodman. “We’ll never let the hard days win.”

Stead Family Children’s Hospital specialists see about one case of ANCA-associated vasculitis in a year. Payten’s was the most serious they’d ever encountered, the Iowa Health Care article said.

Payten received around-the-clock dialysis. She underwent plasma exchange treatments to remove Payten’s plasma and the antibodies that were causing her illness, replacing it was donor plasma.

Payten is currently taking about 14 medications, she said.

Recovery

Payten’s recovery was surprisingly fast. She was off ECMO in eight days rather than the average two weeks. Her lungs cleared faster than doctors expected, said Goodman, and while she does have kidney disease, she doesn’t currently need dialysis.

Payten had to relearn how to hold her head up, chew and swallow food and walk, but she didn’t need inpatient rehabilitation that doctors thought she would.

“She made it back to school for the last day of school,” said Goodman.

An eighth grader this fall, Payten participated in volleyball, but she’s not able to play baseball or softball because of all the running, said her mother.

“She’s just an inspiration to me,” said Goodman. “I’m grasping to hang on some days,” but Payten never complains.

Why complain? Payten asked. “It doesn’t do anything.”

“She’s still doing great in school,” Goodman said. The school and faculty have been “amazing” during Payten’s ordeal.

School staff members made T-shirts — yellow ones, because that’s Payten’s favorite color — and sold them to raise money to pay for Payten’s needs. They’ve established methods of helping Payten deal with cognitive problems caused by lack of oxygen during her illness.

“She’s touched a lot of lives,” said Goodman. “This is. the rest of her life … so we’re just grateful for every single day.”