Pediatric Hospice: The Unknown Road Ahead

January 11, 2019, Gilchrist Kids, Hospice, Hospice Patient Stories
pediatric hospice
Gilchrist Kids physician, Dr. Bridget Pekrul, pictured with Lilley.

The first time Joan Garlow walked through the doors of Gilchrist Center in search of information on pediatric hospice care, she broke into sobs and had to run back outside. She knew she needed help, both for her daughter, Lilley, whose health was progressively declining from a degenerative brain disorder, and for her and her husband, who were struggling to care for their medically fragile child themselves. It was too much to go through alone.

When Joan worked up the courage to walk back inside, a kind woman connected her with Gilchrist Kids. Since that day over a year ago, Gilchrist Kids has wrapped the family in its care.

When Inpatient Pediatric Hospice Care is Needed

While Lilley receives medical care at home, she has also received care at the newly opened inpatient pediatric hospice unit at Gilchrist Center Baltimore, the only one of its kind in Maryland. Under the care of Dr. Bridget Pekrul and the pediatric nurses and aides, Lilley received treatment there for a week in June, when she was having complications from a gastrointestinal problem.

“The Gilchrist Kids Inpatient Unit is a truly unique concept, and is a huge benefit for children and families throughout the community who need hospital level care, but don’t want to go back to a hospital environment,” says Mary Tiso, Gilchrist Kids clinical manager.

“We provide supportive, compassionate care in a small, home-like unit, using pediatric-trained staff who recognize and support each child’s unique needs.”

Support and Guidance

Lilley’s disorder is degenerative, and there is no treatment or cure. There are hard decisions that come with the illness. Invasive surgeries and intravenous feedings may prolong life by small increments, but at the cost of quality of life. Dr. Pekrul and Lilley’s nurse, Jody Staley, help Joan and her husband, Will, weigh these decisions, and they offer non-invasive therapies and medications to help improve Lilley’s quality of life.

The family’s Gilchrist social worker, Susan Scarvalone, has also been a helpful sounding board for Joan. “When you have a child who’s really sick, you never feel like you’re doing enough because you can’t fix it,” explains Joan. “She helps me understand that I am doing as much as I can.”

Caring for the Whole Family

pediatric hospice
Lilley and her parents spending time at Gilchrist Center Baltimore with her Gilchrist Kids team.

Families like Lilley’s can also use Gilchrist Center Baltimore for respite care, which offers around the clock care for children so that parents can have a break from the demands of caregiving. The first time Joan used respite care, she hadn’t had a vacation for 17 years.

Because of Lilley’s medical needs and her inability to eat, speak, walk or use the bathroom, leaving her with a family member or friend wasn’t an option. But with Lilley in the care of a team familiar with her needs and daily routine, Joan and Will felt comfortable going on an out-of-town trip. When they returned to pick Lilley up, she met them with a smile.

“Using respite has been so restorative,” says Joan. “When I come back I have the mental, emotional and physical capacity to be really present with Lilly. I can find the energy to interact and play with her.”

Though the family travels a difficult and unknown road, Gilchrist has been there by their side every step of the way, with loving support and guidance.

The care Gilchrist Kids has offered has been lifechanging for Joan and her family. “Gilchrist saved our lives,” says Joan.

Learn more about Gilchrist Kids, here.

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