Forging Common Bonds — Helping One Special Patient Be a Regular Kid 

July 27, 2022
Janelle Thomas MSN, RN
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For caregivers and patients alike, a positive home health experience is about being open-minded and finding common bonds. That’s what Dior — an 11-year-old girl with a rare neurological condition that requires the support of a wheelchair and a ventilator — and her nurse Valerie both have to say about the experience.

“You might be used to your mom taking care of you, but give them a chance,” says Dior.

Valerie agrees, “You have to really get to know the family and come in with an open mind.”

For Valerie and Dior, it was about finding just a little bit of common ground as a starting point. “Me and Valerie connected on nails, because she did nails, and I love getting my nails done. So that’s what we started talking about, and then I ended up getting to know her more.” Adds Valerie, “We did a whole spa day the other day with masks. Then we did her nails and painted her toes. We’ve done all kinds of different things together.”

“She is chill but then fun at the same time. Our vibes kind of mix” sums up Dior.

Building a Routine for Normalcy and Independence

It’s this rapport that enables Valerie to help Dior build a solid routine that ensures she stays healthy, active, and happy. Their day usually begins at 6:30 a.m. Sometimes Dior is still asleep, and sometimes she is up talking to her friends before they leave for school. “I wake up and I chill for a little bit. Then we do my shower, I get dressed, and I get in my chair.”

After that, they see where the day takes them. “We go on walks. There was a new show I was watching and she and I watched it and she ended up liking it,” says Dior.

A big part of their routine is also maintaining Dior’s breathing tube. “Every week I get my trach changed. We change my trach ties every day and do site care.” Valerie adds, “That’s a big part of it. It’s just cleaning, making sure there’s no secretions, making sure her ties are clean. That way we don’t have an infection.”

Valerie also works hard to find a balance between being a caregiver for Dior and encouraging her to be as independent as possible. “I will do a lot of encouragement. It’s saying ‘Let’s reach a little farther’ or ‘You are capable of lifting that up.’”

Pediatric Home Health Strikes the Right Balance for Patient and Caregiver

Valerie realized pretty early in her nursing career that pediatric home health could be the right fit for her. “I decided to become a nurse because I wanted to help people out and I wanted to help children especially.”

“Nursing in a home care setting, it’s just a lot more intimate. You know, it’s a lot more like family, you get to know each other. You kind of become part of the family. Nobody’s surprised to see you walk in the hall.”  Valerie has definitely found this one-on-one intimacy to be better for her than working in a hospital. “I would never go back because of the stress that’s in the hospital. I’m not tired. I’m not worn out. I can go home and still get exercise and cook a meal, and not just pass out on my bed. It’s a big, big difference.”

And with Care Options for Kids, she feels supported from a training, clinical, and work-life balance standpoint. “There was one time she was really sick. And the whole day I was in contact with the clinical person at the office, just back and forth. It was like ‘Make sure you document that’; ‘Let me know what the doctor says on this.’ There was a lot of support when I needed it.”

If she needs time off, Valerie also enjoys the flexibility. “The PTO is nice to have. If I want to go out of town or whatever the case may be, scheduling is very flexible.”

Dior is a positive child with a positive outlook and a lot of ambition. “I want to do pediatric surgery and give back to the world what was given to me.” She loves music and wants to be a rapper/singer. Dior is also a vlogger and enjoys sharing her perspective on her condition with others, “Just because you have a disability doesn’t mean you’re different from people.” She adds, “But if you do think you’re different, think in a positive way.”

Above all, Dior loves being a regular kid, “Like with my mom, I still get in trouble, right? I’m still just chilling and doing regular kid things.” For Valerie and other pediatric home health nurses, it’s about providing the care and attention that can contribute to that normalcy in some way.