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Family First

A weary mother sits at the bedside of her seriously ill daughter in Sanford Children’s Pediatric Intensive Care Unit. Extremely pale and short of breath, the 6-year-old sleeps. The mother waits for the latest test results, hoping for answers. Minutes seem like hours…

The mother? Jolene Johnson, respiratory therapist at Sanford Children’s since 2000. One of the best, she also serves on Sanford LifeFlight’s pediatric and neonatal teams.

But on this day in June 2011, Jolene sets her professional credentials aside. She’s an anguished mom who wants nothing more than renewed health for her beloved Brooklynn.

The “A Team”

Jolene and her husband, Wyatt, knew it was an odd combination of symptoms. Earlier that week Brooklynn seemed more tired than usual. Then came chest pain, aching back and shoulders, fever and shortness of breath.

An appointment with Dr. Stephanie Hanson at Sanford Children’s Southwest Clinic led to a chest X-ray. The unusual finding of an enlarged heart along with worsening symptoms prompted an echocardiogram at Sanford Emergency Center. The echo revealed a malfunctioning heart valve, yet Brooklynn had no history of heart disease. She’d always been in excellent health.

“When Dr. Storm came down to the ER for a consultation, that was worrisome,” says Jolene. Dr. Waldemar Storm, Sanford Children’s pediatric critical care intensivist, asked questions, thoroughly assessed Brooklynn, then set forth investigating every possible cause for Brooklynn’s mysterious illness. Others got involved, too, including Dr. Matthew Trefz, pediatric cardiologist, and Dr. John Paschall, pediatric critical care intensivist.

“We had the ‘A Team,’ that’s for sure,” says Jolene. “They tested for everything, trying to figure out if an infection was causing the heart enlargement and valve insufficiency. It was a scary time.”

In the meantime Brooklynn grew weaker, sleeping more and more. Jolene stayed at her side night and day while Wyatt tried to keep life normal for Brooklynn’s two sisters at home in Moorhead.

Rare disease, rapid recovery

The diagnosis was surprising: rheumatic fever -- a disease caused by untreated strep throat. Decades ago rheumatic fever was common, but with today’s access to antibiotics, it’s rare.

“Brooklynn hadn’t had strep throat, but then I remembered I had strep throat a couple months earlier,” says Jolene. “I felt terrible when I realized I apparently passed it on to her. She never complained of a sore throat. We just didn’t know.”

The important diagnosis opened the door to the combination of treatments needed for rapid improvement.

“When the fluid was drained off her heart, it was like a switch turned on,” says Wyatt. “That’s how fast she got better.”

Easing the strain

Jolene’s experience as a parent of a hospitalized child left a lasting impression.

“It’s hard being on the other side,” she says. “Waiting for your child to get better and not knowing how long it’s going to take is tough. I have a whole new respect for parents of hospitalized kids. And I can empathize a lot more with how tired they are.”

The Johnsons also experienced what makes life a little easier:

    Wide-ranging children’s services readily available. “We were so lucky to get all the services we needed right here in Fargo,” she says. “And they were well-coordinated, too.”
        Specifically trained pediatric nurses who expertly monitor, assess and care for very sick children. They know what makes them smile, too.
        Child life specialists who support kids -- and give parents a much-needed break. They also helped Brooklynn better cope with shots, blood draws and more.
        A Caring Bridge website to keep everyone informed. “At first I insisted Brooklynn wasn’t sick enough for Caring Bridge, but as time went on, I changed my mind. Wyatt was in charge of it and he did a great job,” says Jolene.
        The support of family, neighbors and friends. “So many of those who cared for Brooklynn were friends of mine -- people I’d worked with for years,” she says. “We were treated like family.”

      The beauty of normal

      After 10 days Brooklynn went home, where healing continued. Two weeks later she was back to her normal, active life.

      “She’s her fun, goofy self,” says Wyatt. “Running, playing with friends, riding her bike, jumping on the tramp... You’d never know how sick she was.”

      Today Brooklynn continues periodic heart checkups with Dr. Trefz and regular care with Dr. Hanson. She also receives monthly penicillin shots to prevent a strep infection.

      And her memory of that hospitalization a year ago? It’s different from her parents.

      “I got to go on a picnic!” she says, then tells about the homemade lunch her grandma brought to the hospital. Brooklynn and her family ate outdoors in Sanford’s healing garden.

      “That was the best day ever,” says Jolene, remembering that moment and hugging Brooklynn. Wyatt raises his hand and Brooklynn gives him a high-five.

      A family together…

      Posted Date: July 2012