Support for families at Norton Children’s Heart Institute and at home

Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, offers an umbrella of patient support to help children and families during their hospital stay and after they transition home.

A multidisciplinary team including doctors and nurses, a dietitian, a pharmacist and a nurse consultant round each day to ensure all aspects of care are optimized, often with parents at the bedside taking part in the discussion.

“Every patient is different, and every family is different,” said Megan C. Boone, R.N., MSN, CCRN, clinical nurse consultant.

The family support team also includes a chaplain, speech therapist, child life specialists offering a variety of complementary therapies, including facility dogs, and palliative care personnel.

Megan said members of the patient support team work with families day to day, so they are ready when it’s time to go home.

“One of the biggest things we work on is education,” she said. “We have videos they watch. We have dolls they can use to practice. We use a teach-back and show-back method.”

Many children in the Jennifer Lawrence Cardiac Intensive Care Unit at Norton Children’s Hospital are on special high-calorie formula, according to Sara A. Chandler, dietitian. She shows parents how to mix the formula so they are confident in how to mix it at home.

“We talk a lot with parents about the feeding plan and feeding goals, and we follow those patients when they transfer to the progressive care unit,” Sara said. “We follow their growth closely and make changes to the feeding plan accordingly.”

Transitioning home

Pharmacists also assist in the transition home, ensuring that all prescribed medications will be covered by the patient’s insurance, according to Heather N. Damhoff, clinical pharmacist. Heather and most of the pharmacists serving heart institute patients have completed pediatric pharmacy residencies in addition to their traditional pharmacy training.

Norton Children’s Hospital has an outpatient pharmacy that delivers medications to the child’s bedside before discharge. The pharmacists make sure parents have the necessary supplies to safely administer their child’s medications at home, and that they know how to store medications, handle missed doses and notice any potential medication side effects.

Even when patients are medically cleared to leave the hospital, no one is sent home until their care at home can be assured. Before leaving the hospital, parents spend a day providing all the care to their child, under supervision. This may include mixing formula; giving medications, injections and other treatments; maintaining a feeding tube; and operating medical devices.

“That allows us to determine when we can safely send the patient home and what additional education is needed,” Megan said.

In addition, parents receive a personalized binder with customized information they need to care for their child.

Megan said coordination among all the team members ensures children receive the best care.

“I think the biggest thing is the way we work together as a team,” she said.

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