Greetings from Sheldon Turtle

Exceptional Care for Children gives patients more than just a hospital bed

Exceptional Care for Children in Newark, Del., rests in the middle of what looks like a recreational park, complete with walking paths and playgrounds, but the building was designed with more than just recreation at heart. Much like the exterior campus, the inside of the building looks as far from clinical as possible. There is hardly a wall without a mural to brighten things up and lighten the mood.

You first meet Sheldon Turtle, the facility mascot, smiling and waving with his heart on his shell from a friendly mural in the hallway connecting the administrative building to the clinical care center.

"Exceptional Care opened its doors in February of 2006. On day one, we had three patients in-house, and we grew from there," said Maureen Langston, director of development. "Prior to opening our doors, though, the organization began as an idea with a nurse who wanted to provide children with an alternative to living in a hospital when home wasn't an option for them."

Doors Open to All

Jeannine S. Winsness, RN, MSN, CRNP, originally founded the non-profit facility with the hope that young resident patients could circumvent life in a sterile hospital atmosphere. That hope has come to fruition as each young patient stays in a private room that has been decorated in a different theme by local artist Dan Gotel. The rooms are designed to be bedrooms rather than hospital rooms, and medical equipment is kept safely close at hand, yet out of sight of the patients.

"What's great about Exceptional Care is that it really is a one of a kind program," commented Amy Hynson, MS, CCC-SLP. "Although the children are medically complex and require medical intervention and equipment such as a g-tube, trach or ventilator, the children get to live life similar to living at home."

Tracie Martin, RN, MSN, director of nursing, further detailed the nature of pediatric care at Exceptional Care for Children. Although the facility is home to multiple children with varying levels of need, it also can expand to accept emergencies or extenuating circumstances such as cases of end-of-life or abuse.

While the facility houses a substantial end-of-life care program as an alternative to hospitalization, as was originally intended, it has expanded to incorporate other, different patient bases. Long-term patients (such as children with cerebral palsy or other chronic illnesses) make up a portion of Exceptional Care.

Along with the long-term care population, there is a transitional population that can include premature infants or babies with congenital abnormalities that cause developmental delays who are brought in for an interim step between the hospital and home environments.

"Currently, we have 31 beds," said Martin. "We are licensed to go up to 35 when necessary, and we take care of medically fragile children who require some sort of medical technology to survive."

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Gentle lighting and soothing sounds bring a relaxing mood to a specially designed room at Exceptional Care for Children in Newark, Del., for children with sensory challenges. Pediatric facilities nationwide are weaving therapy into fun for children with complex medical needs.

For parents of patients at Exceptional Care, there are many opportunities available to be with their child - one of which is the opportunity to spend the night in their child's room. During the transitional period, parents become comfortable as they adjust to and learn to care for their child within a 6-to-12 week training program.

At the end of the program, the parents are brought in for 24 hours, during which time they are completely responsible for attending to all aspects of their child's care, but still benefit from a safety net with the facility's staff.

"It's a good opportunity for [the parents] to be independent, just like they would be at home, but still have us right there to help and answer any questions they many have," continued Martin.

Therapy as a Constant Presence

Exceptional Care incorporates multiple specialties, each of which develop individual patient plans within their department, as well as coordinate with administration and the rest of the facility in interdisciplinary care plan meetings. There are also a variety of therapies within the department, including physical therapy, occupational therapy, speech-language pathology, and play therapy.

PTs focus on mobility and gross motor skills, while SLPs are involved in feeding and communication. OTs primarily work with sensory components and fine motor skills. In addition, play therapy takes aspects from each specialty and combines them in a play setting.

"Everyone has an occupation or job," said Carrie Free, OTR/L. "A child's job is to play, develop and move. Occupational therapy helps kids who have special needs carry out these activities and be as independent as possible."

During a recent visit, ADVANCE had the opportunity to spend some time with the staff and see first-hand the day-to-day schedules in action. A morning play therapy session typically starts the day off with music, singing and dancing - a veritable performance for the caregivers on duty.

For patients who lack certain sensory components or simply don't do well with that kind of stimulation, there is a separate room with gentle lighting, relaxing sounds and touch-based therapies for a more soothing way to begin the day. From here, there are private sessions with therapists to improve any number of developmental functions, schooling for those who are ready, and an abundance of general playtime, during which patients can implement the skills they've learned in their therapy throughout the day.

"Therapy services aren't provided in the conventional way. Therapy is a constant presence throughout the child's day, whether it's working on oral motor skills during breakfast, completing range of motion during bath time and dressing, or positioning during play therapy," explained Hynson. "As a department we strive to work our therapy into the child's day so that it appears natural. Of course there are times when one-on-one therapy is needed, but it's always done in a fun and kid-friendly way."

The staff works in constant contact with both their patients and their co-workers. Meals are served in a small, intimate kitchen, where the patients and staff often eat together. Apart from interdisciplinary meetings, the departments also coordinate more informally through e-mails and face-to-face interactions to better understand various parts of a patient's personal plan, or simply to answer questions regarding equipment or therapies.

Although there are many specialties in the facility, each professional on staff functions while keeping in mind the other factors in a patient's overall care.

"Our top priority at ECC is patient safety," explained Free. "In addition to providing one-on-one treatment sessions, I am also responsible for daily wheelchair checks and basic maintenance. The wheelchairs are checked and adjusted as needed to make sure everything is safe and working properly."

Kids Being Kids

What's remarkable about Exceptional Care is that the staff understands the importance of patients having a regular childhood, regardless of whatever obstacles have been presented. As such, the staff is consistently making an effort to provide patients with the same opportunities as other children.

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All Together Now

Providing gross-motor activities in a group setting can give children needed interaction.

One of these opportunities is the benefit of a good education. Exceptional Care works with its school district to allow patients to attend school locally, and provides on-site classes for those who can't leave the facility.

"We have a pretty extensive opportunity for education for the residents once they arrive at Exceptional Care," said Langston. "Every child over the age of 3 has access to school services provided by the Department of Education here in the state of Delaware, and there are opportunities for children to attend school in the community as well as in an on-site classroom, which we developed in partnership with our local district."

If there's one thing Exceptional Care promotes above all, it's the concept of normalcy. Just as patients are offered a good education, they also have the chance to go on a vacation every once in a while.

For the second time, a team of 32 professionals from Exceptional Care for Children will be taking eight patients on a trip to "the most magical place on earth" - Disney World in Orlando, Fla. The week-long trip will tour three different amusement parks, and therapy plays a huge role in preparing the children for the experience.

By catering directly to both the medical, environmental and emotional needs of its young patients, Exceptional Care has become more than just a hospital. As a pediatric nursing home, the facility has introduced a different model of care for health facilities - standing as a unique combination of care all rolled into one.

Michael Jones is on staff at ADVANCE. Contact: mjones@advanceweb.com


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