Caring for chronically ill kids
CONNOQUENESSING TWP— Paul Learn is 4 years old, loves to play tee ball and dressed as the red Power Ranger for Halloween.
He's also been admitted to the hospital six times in his short life.
The Connoquenessing Township boy has severe asthma and allergies, trachea and larynx problems, an aortic valve deficiency, sleep apnea and short stature for his age — although his doctors don't yet know if the issues all stem from one disorder.
To help them manage his needs and multiple doctor visits, Paul's parents, Robert and Patricia, make use of the Caring Program.
The Caring Program is available for children with chronic illnesses who are enrolled in Pennsylvania's Children's Health Insurance Program through Highmark Blue Shield. The Pittsburgh-based program offers care coordination for children with special health care needs and their families.
In 2005, a care coordinator from the program looked through Paul's health records through the insurance company and found that a coordinator might be able to help the family cope with Paul's care.
Lisa Thompson took over care coordination for Paul in 2007, shortly after his tonsils and adenoids were removed.
She is among the program's 10 care coordinators who cover 49 of the state's 67 counties. Thompson serves Butler, Cameron, Clarion, Elk, Forest, McKean, Potter and Venango counties.
Before the surgery, Patricia said, "You could hear him breathing from anywhere in the house."
"He had never breathed out of his nostrils until the tonsils and adenoids came out," Thompson said.
Paul's breathing is still a little labored but has been much better since the surgery.
To create a care plan, coordinators who are typically nurses and health professionals assess a child's medical status and history, spend time with families to help identify problems and set goals and create a log of the child's doctors, medications and doctor and hospital visits.
One of the greatest challenges Patricia faced was keeping track of Paul's many appointments.
"Lisa has been a tremendous help," Patricia said of how Thompson helps to set up doctor appointments for Paul.
"I can go to the doctor visits with her, help keep her organized,"Thompson said.
Many of the doctors are in Pittsburgh, so Thompson and Patricia try to coordinate appointments together so they can reduce the number of trips.
Paul has seven doctors: a primary care physician; an ear, nose and throat specialist; a cardiologist; a pulmonologist; an endocrinologist; a genetics specialist and a diagnostic referral doctor.
Several months ago, Thompson coordinated a phone conference with most of Paul's doctors to help them all work together.
The Caring Program also offers equipment free to children. Paul received nebulizers for breathing treatments he receives twice a day.
Patricia said since Paul has had a care coordinator, he has been breathing more easily — as asthma control was the biggest issue for the family.
Also, the Learns now go to Paul's primary care physician for the smallest problem to try to avoid emergency room visits.
Patricia sometimes calls the doctor at a moment's notice, making herself available to take him right in.
Because Paul's health problems keep him from being accepted at day care, Patricia stays home to take care of Paul and his 2-month-old brother Noah.
Patricia said Paul knows his physical limits "unless it's showing off time," which includes wrestling with his huge teddy bear.
Paul puts all of his energy into wrestling the squishy bear. Patricia said that sometimes when she's out of the room, Paul will yell, "Help, help! Get him off of me!" She'll run in only to find the bear on top of a laughing Paul.
After wrestling for a while, he breathes heavily and holds his chest. He's OK, "just out of breaf."
The Learns don't know whether Paul will be able to attend public school because of his asthma and allergies. But if he can, the Caring Program will help to educate the school staff on his needs.
Right now Paul is working on preschool work at home. When asked if he can count to 100, he replies with a shrug, "Almost."
For more information on the program visit caringprogram.com.
