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Trying Something New

With a backpack bag slung over one shoulder, Katelyn Tennant joins her sister in grabbing an after-school snack.

The girls drop their bags in the Sanford Children’s Hospital room where eight-year-old Katelyn comes three days a week. As the sisters help themselves to fruit cups, they and their mother, Nicole settle in for what has become a family routine.

Grabbing her Nintendo DS, Katelyn playfully jokes with the respiratory therapist who comes to start the treatment that keeps her alive. She picks out a game as the nurse slips a breathing mask over her face.

“I’m glad I don’t have to stay in the hospital anymore,” Katelyn says.

A cardiac kid

Katelyn has been a “cardiac kid” all her life, her mom says. She was born with a rare heart condition, called trucus arteriosis, having just one artery, instead of two coming out of her heart. Before her first birthday, she had already had four major open heart surgeries.

“Being in the hospital is a pretty routine thing for Katelyn,” said her mother. “Her life has always been different, but that’s our normal.”

In January, the Sioux Falls girl flew to Ann Arbor, Mich., for her latest surgery. It was a serious operation to replace a valve on her heart. Katelyn recovered well and was discharged, coming to Sanford Children’s Hospital to finish her recuperation before returning home.

A new crisis

On her trip back to Sioux Falls, Katelyn started coughing. As the cough got progressively worse, her mother worried about whether she was suffering from some unexpected complication of surgery. Suddenly, Katelyn started gagging and coughed up a large white, rubbery mass, her mom says.

“We had no idea what it was,” Nicole said. “This had never happened before.”

Sanford doctors discovered that Katelyn had developed a very rare condition, called plastic bronchitis. Her body was forming a lining around her bronchial system, which blocked her breathing.

Katelyn would painfully cough up entire casts. She even kept one temporarily as a pet, naming it “Squiddy.”

Saving her life

Doctors started an experimental treatment with a drug called t-PA (tissue plasminogen activator) which is a medication used to break up clots in stroke patients. After Katelyn began the treatment, inhaling the drug in half hour sessions, she stopped the painful coughing, her mom said.

During her t-PA treatment, Katelyn wears a special vibrating vest that helps break up any casts that might be forming in her bronchial tubes. Although she doesn’t like how it feels, she knows that she needs to put the vest on every day at home too.

“She figured out that if she sings with the vest on, her voice sounds funny,” her mother said. “Even with all of this going on, she’s a regular, fun kid.”

While Katelyn had to stay full-time in the hospital, she quickly made friends with the doctors and nurses who were caring for her. The little girl, who loves games of all kinds, regularly “conned” nurses into playing a game of Uno with her during her stays.

“She’d learn the nurses’ schedules and agree to let them take her blood pressure only if they’d come back and play a game later with her,” her mother said, shaking her head.

Doctors don’t know why Katelyn developed this rare condition, but it will likely be something that she will have for the rest of her life.

“It’s awful that this could go on forever, but at least she’s still here today,” said Nicole, wiping tears away from her eyes. “It is a very hard thing for even me to understand, much less to explain it to other people.”

In recent weeks, they have also discovered that Katelyn is mildly allergic to her new heart valve, but the valve cannot be removed because it is keeping her alive. She will probably have to have more surgeries on her heart as she continues growing, her mother said.

This summer, she has plans to go swimming, shoot baskets and to spend time with her sister, Brooklyn. The family is thankful that the experimental treatment is allowing the little girls to play without lengthy stays in the hospital, their mother said.

“This has become our second home,” Nicole says. “We know that if there is an answer, they’ll find it here.”

Posted Date: June 2011