Caring for a child with a chronic illness is never easy. But when you’re a nurse, it means you’re never really off the clock. Your skills, knowledge and patience are needed on the job — and even more so at home.
We talked to three nurses to find out how they cope with the challenge of caring for patients and their own child with a chronic medical issue. We learned that clinical skills are an asset. Nurses are trained to assess situations, ask questions, seek solutions and make tough decisions.
But when the patient lives in your home and in your heart, love is the glue that holds it altogether.
Dawn Fletcher, Piedmont Hospital
Dawn Fletcher credits her 12-year-old daughter, Roxanne, for her decision to become a nurse. When she was 2, Roxi was diagnosed with severe autism and profound mental retardation. At the time, Fletcher, RN, BSN, was pregnant with her second daughter, Lexi.
While Lexi developed normally, caring for Roxi has been a challenge for the Fletcher family. She has never been toilet trained and there were daily outbursts of hitting, biting, scratching and pinching.
“She is not able to communicate her wants or needs, but she is mobile, loves to eat and is likely to injest non-food items [a diagnosis called pica],” Fletcher said.
After eating a latex glove last summer Roxi had bowel surgery.
For five years, Fletcher cared for her daughters and worked in sales and operation management. Exhausted, she took a year off from work.
“I was wondering how to use my strongest qualities to better the world and I had an epiphany,” she said. “I would be a nurse. I think Roxi’s purpose was to open my eyes.”
Roxi has taught Fletcher to take nothing for granted, to appreciate differences in people and to see every obstacle as an opportunity to learn. She knows that when Roxi lays her head on her chest and makes an “Mmmm” sound, it’s her way of saying “I love you.”
“Having her helps me take care of my patients who are very chronically ill. I can relate to them [with] a deeper level of understanding,” said Fletcher, a transplant unit clinical supervisor at Piedmont Hospital.
Nursing puts her own life in perspective. Not much surprises her or offends her on the job, and Fletcher loves when patients come back after an organ transplant and she can see the transformation they have made.
“It’s like a rebirth. I absolutely love nursing and I hope my passion shows through,” she said.
Last year, the Fletchers made the difficult decision to place Roxi in a residential care facility in Valdosta, where professionals could care for her and work on developmental skills.
“She was 5-foot-4 and weighed 106 pounds, but was developmentally a 1- to 2-year-old. The risk of injury to herself and everyone else was extremely high,” Fletcher said. “When I look back on it, I’m not sure how we did it. It was a lot more difficult than we admitted, but the right decision is not always the easy one. It was hard to let go.”
When she visits Roxi, Fletcher takes her to the playground, where they sing nursery songs and eat snacks. The girl is making behavioral and developmental progress.
“Roxi has a megawatt smile and she has a roommate that she absolutely adores,” she said. “It was the right decision for her and us. She’s blossoming as well as she can.”
Kathryn Hurst, Rockdale Medical Center
When her son, C.J., didn’t sit up by the time he was six months old, Kathryn Hurst knew something was wrong. At nine months, he was diagnosed with cerebral palsy.
“I knew in my heart something was wrong, and to have a health care professional make a diagnosis and tell us how to get help was a relief,” said Hurst, RN.
Hurst was taking prerequisite courses for nursing school at the time, and C.J.’s diagnosis inspired her to finish her degree.
“School had never come easy for me, but I knew I needed to become a nurse so that I could provide for us, and I wanted to learn everything I could about his prognosis. I learned a lot about how to care for him in nursing school,” she said.
With help from her parents and her partner, Chris, who travels most of the week, Hurst graduated from Georgia Health Sciences University in May. Today, she works on the medical oncology floor at Rockdale Medical Center.
C.J., 4, attends preschool part of the day and has in-home day care when Hurst is working. He doesn’t communicate verbally and hits his head when he’s upset, so he needs constant supervision. C.J. has been helped by occupational, physical and speech therapy.
“He started to walk at Christmas and that was incredible,” Hurst said. “He knows us, his grandparents and caregivers, and [he] runs up to us when he sees us to give us hugs and kisses. Down deep, he’s a 4-year-old and he amazes me every day.”
Being a nurse helps Hurst care for the bumps and bruises that with from C.J.’s unsteady walk, and it helps her communicate with his doctors.
“They know I can understand what they’re saying. I can ask better questions and look things up if I need to know more,” she said.
Hurst’s days at work are busy, but she enjoys her job.
“I love nursing. Some days in oncology are horrible, but even the smallest things can make a difference to patients,” she said. “It’s very personally fulfilling to come home and think about the day and know that I helped people who needed it most.”
At home, she moves seamlessly into the role of mother — feeding, bathing and parenting C.J.
“It seems like I don’t stop and I don’t get much time to myself, but I could never give up on my son. He’s my life,” Hurst said. “He inspires me, and making it through nursing school taught me that I can do this. I don’t ask for an easier road, but for a stronger back.”
Davina Drakeley-Lever, Georgia Health Sciences Children’s Medical Center
Because she was a pediatric nurse, Davina Drakeley-Lever believed she could stand up to her pediatrician when her son was 18 months old and still wasn’t talking. She enrolled Alwyn in speech therapy and an early-intervention program for infants and toddlers with developmental delays. By the time Alwyn was 3, he was diagnosed with severe autism.
Although Drakely-Lever, RN, was a nurse, she still had no idea what to expect.
“It’s such an abstract diagnosis and every child is different,” she said. “It’s not like diabetes, where there are books to tell you what to do.”
With both parents working, trying to find child care for Alwyn and taking him to therapy appointments, the family was stressed.
“He’s very active and I was working night shift and not getting a whole lot of sleep during the day,” she said.
Her husband, Charles Lever, is now a stay-at-home dad, so she no longer worries about Alwyn while she’s at work.
“Work is therapy. It gives me adult interaction with people who have supported me through hard times, and I’m using my skills to help other people,” said Drakeley-Lever, a pediatric intensive care and emergency room nurse for almost 16 years.
Because she can deal with their behaviors and is comfortable talking with parents, she’s become the go-to person for autistic patients in the ER at Georgia Health Sciences Children’s Medical Center in Augusta.
“Alwyn is now 6 and has been mainstreamed into kindergarten and is learning to recognize words. He still can’t dress himself or walk himself to class,” Drakeley-Lever said.
He likes playing games on the computer and iPad.
“He’s a smartie, but it’s hard to say what he knows or what he can do, because he isn’t verbal,” she said. “Having a child on the autism spectrum is very stressful for parents. But my husband and I have learned to appreciate the baby steps Alwyn makes as giant leaps forward.”
At Camp Puzzlepalooza, a camp for autistic children in Aiken, S.C., Drakeley-Lever met other families struggling with their child’s diagnosis and trying various treatments that aren’t evidence-based.
“As a nurse, I thought people should be aware of the medical therapies and resources available before they tried some of the more obscure treatments, and as a parent, I was at a point where I could talk about it,” Drakeley-Lever said.
She enlisted the help of developmental pediatrician Dr. Caroline DaBattisto to form the Autism Spectrum Disorder Support and Resource Group, also known as the A-Team.
Parents meet monthly at Georgia Health Sciences Children’s Medical Center to learn about resources and research, and to encourage each other.
“I see new faces at the meetings every month,” Drakeley-Lever said. “As a nurse, I find autism frustrating. The numbers are increasing and we don’t know why. Pediatricians need more education.”
Augusta is not as rich in resources as Atlanta.
“Sometimes if something’s not there, you just need to create it,” she said. “I hope our group will help others.”
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