‘Honored to be his mom’ | Health Beat

For weeks, Abby and Ryan Amesbury sat beside their 3-year-old son, Jase, as he fought a life-and-death battle against influenza.

When he emerged victorious, they wept with gratitude and relief.

More challenges lay ahead. They knew that. But they were ready to they embrace them with love and devotion.

“Right from the get-go, Ryan and I said we will do whatever we need to do in order for him to succeed and thrive,” Abby said.

That included frequent trips from their home in northern Michigan to visit pediatric specialists at Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids.

Three hours each way, in sun or rain or snow—they buckled up and made the drive.

Today, Jase is indeed succeeding and thriving.

And to his parents’ relief, their drive has gotten shorter for some appointments.

Thanks to telemedicine, Jase can see his pulmonologist much closer to home.

They meet across a video connection, provided at the Helen DeVos Children’s Hospital clinic in Traverse City. That means more time at home for Jase and his parents.

“Not only is it convenient to drive just one hour versus three hours, we can stick with the same doctor,” Abby said.

Moving ahead, with support

For Jase, the bout with influenza is a distant memory.

He was 3 years old when he became sick with a flu bug, in January 2018. His symptoms quickly progressed and he became so ill, he went by Aero Med to Helen DeVos Children’s Hospital.

His medical team placed him on ECMO, a life-support device, to assist his heart and lungs as he battled the infection.

Recovering from the illness took several months. After he overcame the infection, Jase went to therapy to relearn to walk, talk and accomplish other daily activities of busy preschoolers.

Fast-forward four years. Jase is now a 7-year-old boy, living a pure Michigan summer at his home in Boyne City.

He rides his motorized bike, swims in the backyard pool and plays with his 3-year-old sister, Lennon.

He tried T-ball in the spring and loved it. He is a kindergarten graduate and looks forward to first grade in the fall.

Slipped in among Jase’s many joyful activities are frequent appointments with specialists. In the past few years, he has battled several new lung infections that required hospitalization.

With medication and treatment, his medical team and parents work to keep him healthy.

“I feel like we are in a really good place,” Abby said. “It’s still a struggle and there’s definitely still some hard times, but I know all of us are strong and we can get through it. It just takes some extra support.”

Checkups close to home

One of the biggest challenges facing Jase is that his lungs remain susceptible to infections, said Johanna Zea Hernandez, MD, his pediatric pulmonologist.

The ECMO treatments that saved his life while fighting influenza caused long-term effects on his lungs.

And he has asthma.

His airways are dilated—a condition that is common in people with cystic fibrosis. That allows mucus to remain in the lungs and makes them more susceptible to bacteria growth.

“He gets sick easier than other kids his age. And he has more recurring episodes,” Dr. Hernandez said.

In 2019 and 2020, Jase went to the hospital several times for respiratory infections—spending a total of three weeks in the hospital.

But last winter, he managed to avoid the need for hospitalization.

A number of treatments have helped him stay healthy.

Jase receives daily breathing treatments and takes medication to thin the mucus and prevent infections.

And he uses a therapy vest—the same kind used by people with cystic fibrosis. Twice a day for 20 minutes he puts on the vest, which shakes his chest to help clear his airways.

If he is fighting an infection, he uses the vest more often—three or four times a day.

Last year, he underwent surgery to remove his tonsils and adenoids to help relieve his sleep apnea.

“We are trying to optimize anything that can help with his breathing,” Dr. Hernandez said. “We want to help him have a good quality of life and, at the same time, prevent hospital admissions.”

The Amesburys and Dr. Hernandez also delved into other possible causes behind Jase’s lung infections, consulting a geneticist and an immunologist.

When a recent blood test showed his immunoglobulins were low, he began to receive infusions at home to boost his immune response.

Jase also underwent a lung biopsy to determine if he had a condition called post-infectious bronchiolitis obliterans. Although the biopsy was not conclusive, it was “very suggestive of that diagnosis,” Dr. Hernandez said.

He will begin a new treatment for that condition soon. Once a month for a year, he will be admitted to the hospital for a few days to receive high-dose pulse steroids.

Many of his appointments with Dr. Hernandez occur in Traverse City, through a video connection, at a Helen DeVos Children’s Hospital clinic at Munson Healthcare’s Foster Family Community Health Center.

As a medical assistant examines Jase, Dr. Hernandez follows along on video—listening to his heartbeat and breathing, peering into his ears, nose and throat.

A bonus for Jase is that he can see the images projected on the screen, too.

“The technology that came along with the appointment blew me away,” Abby said.

Dr. Hernandez hears that response often with telemed appointments in Traverse City, Lansing and Ludington. At the end of an appointment, she lets parents know that if they are not happy with a telemed visit, they can make an in-person appointment in Grand Rapids. Few families take her up on that offer.

“When the parents come into the clinic and see the cart and this big screen, they are impressed with it. And the kids love it,” she said.

Dr. Hernandez credits Jase’s parents with his progress.

“They are a wonderful family and good communicators,” she said. “They have gone through so many things. It is a privilege to help them.”

A patch for his eye

Jase and his parents recently received good news about his vision.

After he recovered from influenza, he was legally blind in his left eye. The eye also wandered. An eye muscle surgery in 2020 corrected the alignment.

He wears an eye patch for a period of time every day on his right eye in hopes of improving the vision in his left eye.

Jase had a telemedicine visit with his pediatric ophthalmologist, Julie Conley, MD. And she provided an eye chart to his parents so they could check his vision at home.

“The doctor says he has some vision in his left eye,” Abby said. “And kids have up to age 10 where the eye and the brain will continue to learn to come together.”

Family time

Abby was pregnant during Jase’s long hospital stay for influenza four years ago.

Now Jase’s little sister, Lennon, is 3 years old. The two share a special bond.

“They definitely have their little fights, but they do so well together,” Abby said. “Lennon is like a little mama bear to him. If Jase isn’t feeling well, she will go over and check on him.

“It melts my heart.”

And through all the tests and treatments, Abby marvels at her son’s happy disposition.

“He is a trouper with all these things,” Abby said. “I can’t be more thankful that he is as easygoing as he is. He knows what he has to do and just rolls with the punches.

“I’m honored to be his mom.”