A Second Home

Vol. 17 • Issue 10 • Page 26

There may be no place like home, but that does not stop the staff at the Wanaque Center in Haskell, N.J., from trying to provide some familiar comforts for patients in the pediatric ventilator unit. Vibrant murals with under-the-sea and animal themes evoke an elementary school’s cheery d‚cor rather than a medical facility’s traditionally stark hallways.

Unfortunately, many clinicians say they do not see enough specialized pediatric programs like this one to meet the increasing demand for pediatric long-term care. “There are considerable numbers of children in adult long-term care facilities because they just have nowhere else to go,” said Ruth Stein, MD, professor of pediatrics at the Albert Einstein College of Medicine in New York. “It’s a long-standing problem, ever since we’ve been able to keep more children with highly complex medical conditions alive.”

The team at Senior Management, who oversees Wanaque, recognized this need back in 1990 and recruited Ed Peters, RRT, to establish the facility’s pediatric ventilator unit and serve as its director of respiratory therapy. Over the past 18 years, he has grown the program from a single wing that once housed dusty, forgotten furniture to a bright and cozy 62-bed unit sprawling across three wings.

Making the transition

Peters currently oversees 54 patients and employs a multi-professional team of respiratory therapists, nurses, nurse practitioners, physical and occupational therapists, speech pathologists, recreation staff, and auxiliary services. Residents range in age from 0 to 22 years and generally have either anoxic encephalopathy or a neuromuscular disorder as their underlying condition.

“We use self-contained, portable ventilators which allow us to take much sicker children out of the pediatric ICUs now,” Peters said. “The level of care has gone up because the children we’re taking are much more complex than they were 10 to 15 years ago.”

Many of the patients at Wanaque are transfers from acute care hospitals through a contract the facility has with the state of New York to help manage its overflow of ventilator-dependent patients. A large number come from Blythedale Children’s Hospital in Valhalla, one of the state’s largest acute specialized rehabilitation hospitals for children.

“We rely on facilities like Wanaque to take care of our patients who no longer need acute rehabilitation but who may need more time on the ventilator or whose parents may need to learn more about home care and prepare their homes and finances for the transition,” said Joelle Mast, MD, Blythedale’s chief medical officer.

Recognizing the concerns and fears families might have, Wanaque’s staff strives to make the admission process a gentle one. “One of the biggest challenges is that it’s very difficult for many of the families who visit to see their children in an institutional setting,” Peters said. “We try to make the place as much like home as possible within the limitations of Medicaid requirements.”

A supportive environment

Fairy tale characters, photographs, and posters adorn the walls of the semi-private rooms. Colorful blankets and toys festoon the beds. These personal touches are a hallmark of a pediatric facility that supports all the dimensions of a child’s physical, mental, social, and developmental well-being.

“Everything from the orientation of a facility to how they spend time is really directed in a different way (from adult long-term care facilities) when you’re speaking about children,” Dr. Stein said. “With children and adolescents, you want to increase their developmental potential and maximize their developmental capability.”

At Wanaque, a dedicated recreational staff works with the medical personnel and sometimes special education instructors to plan developmentally appropriate activities that can engage the children on different levels. First and foremost, all of the children receive an education regardless of their medical condition, as mandated by state law. That means something a little bit different for each child; those who are bed-bound or have extreme medical complexities receive bedside education, while those who are more medically and neurologically stable attend classes at an on-site facility, Peters said.

In addition to education, specialized long-term care programs like Wanaque’s provide children with chronic medical issues the ability to develop ties with their peers. Lined with dozens of large windows, the center’s day room serves as a bright, airy backdrop for activities like Bingo, dress-up, and arts and crafts. It also is a change of scenery for some of the sicker children who receive music therapy and sensory stimulation there.

The great liberator

Such activities would be extremely difficult, if not impossible, without the technological advances in medical equipment seen in the past decade. “Certainly for the children as they develop cognitively, the ability to use technology is a great liberator, and they can do many things in life nowadays that would not have been possible years ago,” Dr. Mast said. “Every year becomes more exciting as we look forward to the new technology that continues to give our patients greater and greater freedom, and therefore, also gives the families more freedom.”

Some of the biggest improvements the unit has seen since its early days are in the quality, capability, and portability of mechanical ventilators and supplemental oxygen systems.

With up to eight hours of battery power, the lightweight, compact ventilators attach to the children’s wheelchairs to make trips to professional wrestling events, the circus, county fairs, and hayrides possible, and even allow pumpkin-picking in their own backyard. These opportunities allow the children to achieve a greater sense of normalcy.

Family ties

In all the excitement, the children use the excursions to bond with Wanaque’s staff. It takes a special kind of health care professional to work with medically complex children who require long-term care – someone who has a big heart and tough skin. Making the children feel at home often involves taking on a deeper, more emotional role with the children. Many of them do not see their families frequently.

“Not every respiratory therapist can work with kids like this,” Peters said. “It’s very tough emotionally to see these children; that’s probably the hardest hurdle to get over.” But for those who have made the leap, gaining the love and friendship of these children seems to be worth all of the challenges.

The adjustment took some time for staff therapist James Belluci, CRT, who joined the team at Wanaque about two years ago, after working for several years in the intensive care unit at a local community hospital. “In acute care, you don’t really get as attached to anybody, because they’re in and out,” he said. “Whereas here they’re little kids, and unless you’ve got a heart of stone, you get attached. I have three little ones that I watch over as if they were my own.”

Other staff members echoed similar connections. It is not unusual for the caregivers to use outside resources to provide the children with items such as comfortable outfits, bigger playpens, and flashier mobiles to enhance their quality of life.

“You’re just not a therapist here,” Belluci explained. “You become a parent to 54 kids on vents. You need people who care. You can’t come here and just go through the motions. If you do, these kids will die.” n

Colleen Mullarkey is assistant editor of ADVANCE. She can be reached at [email protected].