A Careful Touch: Pediatric Home Care
Cecelia Corey gently picks up her four-month-old grandson Fionn from a crib, which sits in the middle of the living room of the Clinton home where she lives with her husband, Jerry. It’s an old Victorian farmhouse with wooden floors. A pouch on the side of the crib is filled with wipes, gauze, a jar of petroleum jelly and a bottle of olive oil. Cecelia is cooing at Fionn and rocking him in her arms. His face lights up with a smile. “He’s a very friendly baby. He’s not shy or reticent or afraid of strangers at all. I think he’s going to be a social butterfly,” says Cecelia.
Fionn is a very friendly baby. He’s not shy or reticent or afraid of strangers at all. I think he’s going to be social butterfly. - Cecelia Corey
Jerry and Cecelia Corey are proud grandparents to young Fionn, who at first glance appears to be a happy and healthy baby. But Fionn has a rare medical condition called epidermolysis bullosa—meaning that even the well-intentioned, loving touch of a grandparent to his bare skin can cause painful blisters if that touch creates any friction. To prevent the blisters from growing, the Coreys have to carefully pierce them with a sterile needle, gently and carefully dab any liquid with a sterile nonwoven sponge, and go through a multi-step bandaging process that includes application of petroleum jelly, a frictionless silicone strip, nonstick gauze, and another stretchy material to hold everything in place.
Preventing Fionn from getting blisters poses several challenges. Changing soiled diapers is a two-person job. “One of us will hold his legs while the other cleans, and you can use wipes, but you have to dab. And if it’s really bad, you use a squirt bottle with water. After he’s clean, you must reapply white petroleum jelly with a sponge. It can be quite a process,” explains Jerry.
Fionn can also cause himself to blister by rubbing his own skin. “Well, of course, a baby will start grasping things to put in their mouths. It’s all a part of that neurological development,” explained Cecelia. The Coreys are prepared to wrap his hands in mitts, but so far, he hasn’t caused himself any blisters. “There’s a lot of trial and error with him. You know, as, as time goes on, we’re learning what he can tolerate,” explains Jerry. The Coreys are nearing retirement age and find themselves caring for an infant who, because of his medical condition, has a lot of extra needs.
Thankfully they have help.
Northern Light Home Care and Hospice has a pediatric home care program. Home Care Nurse Theresa Phillips comes by twice a week. She chats with the Coreys about questions or concerns they might have, she checks Fionn’s vital signs, weighs him, and listens to his lungs to make sure he’s developing as he should. She’s also there to help them coordinate care. “Parents and grandparents of health challenged kids are trying to manage and juggle their daily lives, and we’re that bridge; we’re their resource. We’ll take it one step at a time, and find ways to help,” explains Theresa.
Northern Light Home Care and Hospice offers a range of services for pediatric patients, from home care to palliative care, to hospice care. “Home care” covers patients who are acutely ill, while palliative care is a program for those who are critically ill or have a chronic condition. Hospice is end-of-life care, which is focused on providing comfort and symptom management.
Greg Burns, RN, is helping Northern Light Home Care and Hospice launch its pediatric program in the northern half of Maine. Through educational materials and clinical experiences, Greg provides specialized training in pediatric home care, palliative care, and hospice care to home care clinicians and providers throughout the system.“Kids aren’t little adults. I think the effect on the family unit and the wider community is exponentially greater because kids aren’t supposed to be sick or die. When you have kids who are critically ill there is this much bigger ripple effect within communities,” he says.
In the Corey’s situation, while there is no cure for Fionn’s disease, his case is not fatal, and there’s hope it might improve through medical discovery. But until there’s a cure, managing the disease will require wraps, bandages, constant care, and a lot of love.
Cecelia adds, “Prince charming-- that’s what we call him. He’s a very sweet baby.” Jerry chimes in, “I’m smitten with him. He’s wonderful. He’s so lovable. He really is.”