Vol. 14 •Issue 1 • Page 28
Home Pathways
Creating a Facility That Ventilator-dependent Children Can Call Home
They’re not just patients in small packages. They’re very special children who come to us from acute-care hospitals, rehabilitation centers and private homes due to premature births, birth defects, disease processes and accidents.
Holland-Glen, Hatboro, Pa., is a successful not-for-profit ventilator and medically complex pediatric/adolescent facility specializing in patients 1 month to 21 years of age. Children are admitted for respite care, short-term rehabilitation or intravenous therapy, caregiver training to go home, or long-term care. We encourage independence, community integration and family involvement.
Our venture here began about a year ago. Holland-Glen’s board of directors recognized a need for a ventilator facility for children that didn’t turn away individuals because of what insurance they did or didn’t have. This was a change from Holland-Glen’s original focus of community group homes for residents with mental health problems and retardation to an entire population of pulmonary and subacute level residents.
To accommodate this move, Holland-Glen underwent many modifications, including becoming accredited by the Joint Commission on Accreditation of Healthcare Organizations, upgrading our ventilator fleet, adding portable radiology and echo capability, and moving to a new 30-bed facility.
Our patients live in a grand old mansion with beautiful landscaping and two courtyards. Each resident’s room is decorated according to his or her preferences. Some families choose special wallpaper borders and bring personal items and pictures from home.
THE PULMONARY PROGRAM
Currently, Holland-Glen is home to 25 children, many of whom are trached and on mechanical ventilation for life support. All of our ventilated children use compact, lightweight ventilator systems.
This technology provides features such as pressure support, flow triggering and noninvasive positive pressure ventilation, while allowing the children to have greater portability and mobility. Several of our ventilated children attend outside school programs, and without these portable ventilators, it would be nearly impossible.
Other respiratory equipment the children commonly use are nebulizers, airway clearance vests, continuous and bilevel positive airway pressure, intrapulmonary percussive ventilators and pulse oximeters.
More than 10 years of experience and many success stories in weaning and pulmonary rehabilitation have earned Holland-Glen a reputation of quality and excellence in caring for pulmonary-impaired patients.
One particular case stands out. A boy came to Holland-Glen on a mechanical ventilator and a feeding tube. He was too weak to pick his head up off his pillow. A year and a half later, he’s weaned, off oxygen, and preparing to be decannulated. He fed himself for the first time in four years. He now can walk and go to school five days a week.
What makes our program unique is our constant refinement of patients’ individualized care plans. Frequent assessments and intervention allow us to focus on patients’ age and progress and change care plans in a timely way to assist in the healing process.
Prior to patients entering the program, the clinical staff works closely with patients’ families, referring facilities and payers to determine the proposed length of stay of each individual. Our primary care physician assesses each patient for medical and pulmonary needs. The physician and a nurse practitioner visit each patient weekly or as often as medically necessary. They’re also on call 24 hours.
Respiratory therapists, nurses and nursing assistants provide comprehensive professional and custodial care on a daily basis. Unlike a typical hospital RT, our staff is the family for most of our children. The great thing about that is they get to experience the joys and frustrations of advancement in therapy and life skills. They join patients on trips to the zoo and aquarium. Unfortunately, they also feel the pain of loss with many of our terminal children.
Our talented respiratory staff has the opportunity to share these on-the-job experiences with respiratory students from a nearby college who use Holland-Glen as a clinical observation site.
THE TOTAL PLAN
Our holistic patient outlook begins with the individual diagnosis as an important consideration, but our total plan also takes many other factors into account. An admission that has multiple diagnoses may have multiple system failures.
For example, wound and skin conditions, depending on the extent, can require much nursing time to treat. We take great pride in prevention of skin breakdown and infection of wounds. Many other medical facilities have requested copies of our protocol for infection control and wound care.
Different medications can have different reactions and can affect a child’s skin condition or lucidity. Chemotherapy decreases immune system response and may cause nausea affecting both nutrition and therapy.
Hospital rebound can cause a child a few days to weeks to adjust to new surroundings and new caregivers. Our multidisciplinary-team approach allows us to meet each patient’s needs clinically, emotionally and socially. It includes administrators, a primary care physician, directors of respiratory care, nursing and social services, an on-site teacher, and the support staff. Our focus is on all aspects of patients’ daily care, with an emphasis not just on their conditions, but also on respect and love for each child.
FAMILY AND COMMUNITY INVOLVEMENT
Holland-Glen creates an atmosphere where healing begins and recovery occurs, and family involvement is encouraged and welcomed. We believe that family members and case managers are an integral part of the children’s healing process. Family members have a love bond and deep interest in the therapies and treatments needed for recovery.
When appropriate, the staff performs an evaluation of the patient’s caregivers to gauge their abilities to care for their family members at home. If the caregivers are capable, we begin a training program focusing on skills such as ventilator and tracheostomy care.
Our goal always is to return the patient back to his or her home. However, when this isn’t an option, we provide quality care that’s as home-like as possible. Special programs such as pet and massage therapies are among the children’s favorites. Children who are medically stable participate in field trips to local tourist spots.
Other organizations visit on occasion, including Girl Scout troops and karate schools, and volunteers from local high schools and middle schools read to the children.
At a time when everyone is concerned with the rising cost of providing quality, appropriate health care, Holland-Glen offers a cost-effective model in which this can be done in a nurturing environment. Our programs emphasize recovery without the complications associated with extended hospitalizations.
We can admit residents directly from hospital intensive care units. Most skilled nursing facilities aren’t equipped to care for these patients, but our mission is to provide all services necessary to admit, treat and, when possible, discharge to home these very special, medically complex patients.
Nevill is director of clinical services at Holland-Glen, Hatboro, Pa.
