Home Sweet Home

Snug in his snowsuit, Kolton looks up at the white sky. A snowflake lands on his cheek and he giggles. At age 2, he finally gets to meet winter.

“It’s wonderful to watch,” says his mom. “And it’s all because Kolton’s health has been really good this past year -- not a single hospital stay.” Vigilant parents, a team of specialists and services, and a new approach to care have made a play-in-the-snow difference.

Whole child, special needs

Born at 28 weeks, Kolton began a fragile life in Sanford Children’s Neonatal Intensive Care Unit in in Fargo, ND. Two months later he grew strong enough to go home.

His parents, Sarah and Jason Saude, had to make a very important decision: Who would they choose for a pediatrician? Who would they trust? Kolton’s premature birth had caused conditions that required close, comprehensive medical care for years to come.

They selected Dr. Stephanie Hanson and received a level of care that exceeded expectations. She introduced them to Sanford Children’s Medical Home Program -- an innovative approach to providing best possible care to children with special health needs.

“The program focuses on the whole child, not just one specific aspect,” says Dr. Hanson. “For kids with ongoing conditions that’s especially important because they receive care from multiple specialists, services and therapists. Medical Home brings the entire picture together. It’s great for everyone -- the kids, the parents and the medical team.”

Consider Kolton’s picture of care. A Sanford pediatric pulmonologist treats his lung problems. Sanford’s Neonatal Growth and Development Program tracks his maturity. A Sanford physical medicine and rehab specialist addresses his cerebral palsy. Dr. Hanson provides his primary care. And that’s just part of the team. Kolton has special equipment needs, too, and receives services from Sanford pediatric therapists, the Moorhead school system and others.

“We also rely heavily on the involvement of the parents,” says Dr. Hanson. “They’re the true experts on their child.”

A security blanket

Sarah describes Medical Home as a security blanket and a stress reliever. “It’s hard enough keeping everything straight, but when you’re a parent of a child with special needs it’s even more involved,” she says. “Medical Home organizes the care and keeps everyone on the same page. The Medical Home Care Coordinator is a great resource, too.

Every child in the Medical Home Program has a care plan -- a simple three-page document that’s up-to-date and lives in the medical record. A hard copy is available to others involved in the child’s care such as daycare staff, out-of-town providers, schools, babysitters and grandparents.

“We don’t have to keep repeating the information,” says Sarah. “It simplifies the process.”

Besides the medical basics, the care plan includes Kolton’s likes and dislikes so caregivers know exactly how to treat him. “Likes to be cuddled -- that’s in there,” says Sarah.

Jason appreciates the built-in responsiveness of the program. “Kolton’s conditions can worsen quickly, so when we see symptoms, we know he needs prompt attention,” he says. “Calling in and getting the help we need right away has avoided many problems. Kolton’s doing really well.”

How well? Every morning Jason and Sarah get a reminder. Kolton dislikes waking up, but a certain sound gets him going. “As soon as he hears country music playing on the radio, he’s up in his crib dancing,” says Sarah.

Could you benefit?

If you have a child with special health needs, ask your pediatrician about Pediatric Medical Home. It’s a model of care that brings all the pieces together for the sake of your whole child. Could anything be more important?

Learn more about Sanford Children's.

Posted Date: January 2011

Home Sweet Home

Eyes sparkling and a ready smile, little Kolton loves trucks, shovels … and hugs. A new, innovative approach to care makes a happy difference for kids with special health needs. Parents like it, too!