Ian (center) with mother Jennifer (right) and family
“As a mom, you don’t think there will be ongoing care with your child, such as my child has,” begins Jennifer Cooper as she tells the story of her family.
She is the mother of five children – the second youngest of the bunch is 16-year-old Ian.
The first things you notice about Ian are the wildly-trendy hairstyle, the headphones slung around his neck, and a “too cool” teenage attitude. He has a brilliant smile, but it remains hidden behind a medical mask most of the time. It is not a fashion statement but a medical necessity.
Ian is waiting on a heart transplant.
At just ten months old, he was diagnosed with hypertrophic cardiomyopathy. This rare condition causes the heart muscle to become too thick to pump blood through the body.
In the years since he has had several surgeries, he received a pacer/defibrillator and has a peripherally inserted central catheter (PICC line) to deliver medicine directly to his heart. The PICC line requires routine dressing changes to ensure the area stays free of infection, usually done by a home healthcare nurse.
To start with, the PICC line was tended to by a team from the hospital that was caring for Ian. This care then transitioned to Empath Health and pediatric nurse Sara Perszyk.
“When I first talked with Sara right away, she wanted to set up a meeting with myself and the team that had been caring for Ian to make sure he was getting the same level of care,” says Cooper. “Her professionalism put me at ease.”
Perszyk not only ensures Ian receives the right medical care but also helps to ensure the family’s needs are being met. This can be anything from arranging for extra medical supplies to other needs of daily life.
As a result of Ian’s condition, he is not able to attend school regularly. He does what he can at home but sometimes need extra help. Through the Partners in Care program, Empath Health connected Ian to additional resources for furthering his education.
“Sara comes out a lot, and I feel comfortable talking to her,” explains Cooper. “She’s there if I need some support.”
That level of comfort is something that has helped Cooper several times for instance, Empath Health has helped connect the family to resources to help with needed car repairs. It’s a blessing Cooper is grateful for.
Raising a child is no easy task, even more so when the child has complex medical needs. It takes a team to provide care and support.
Cooper adds, “We couldn’t do it without Empath Health.”
Learn more about Empath Health care, services and career opportunities at EmpathHealth.org or call 727-467-7423.