Michigan Cares

The Gardner and Parten families have a combined total of almost 20 years of experience with the University of Michigan C.S. Mott Children’s Hospital’s Pediatric and Adolescent Home Ventilator Program.

Fourteen-year-old Alex Gardner moved to the area when he was six, and Rebecca Parten, also 14, started receiving care at Mott Hospital when she was just two years old. Alex and Rebecca are among the more than 150 patients in the program who require mechanical assistance for breathing. Ventilators or bilevel positive pressure devices (also called biPAP) are used to assist children who are not able to effectively breathe on their own.

COMPLEX NEEDS

Children like Alex and Rebecca have complex medical needs, which are optimally managed by a team of experts. That team is led by pulmonologist Wan C. Tsai, M.D., Pulmonary Director of the Pediatric and Adolescent Home Ventilator Program and Assistant Professor, Department of Pediatrics and Communicable Diseases, and Virginia Nelson, M.D., M.P.H., Clinical Professor of Physical Medicine and Rehabilitation and Co-Director of the Pediatric Home Ventilator Program.

Nelson helped found the program more than 20 years ago when Mott Children’s Hospital was the first medical facility in Michigan to discharge a patient supported by a ventilator. Other members of the medical team include additional pediatric pulmonologists, including newest team member Manuel Arteta, M.D., Clinical Assistant Professor of Pediatrics, a nurse practitioner, respiratory care specialist, social worker, and dietitian. Other professionals often involved in patient care include a physical therapist, occupational therapist, and rehab engineer.

UNIQUE APPROACH

“This program is unique in its emphasis on the multidisciplinary approach,” says Tsai.

“A lot of the children have difficulty breathing and moving. One process may lead to the failure of the other. Ginny (Nelson) and I together can offer better-coordinated management than the traditional scattered specialist visits. We are also extremely committed to leading research in the care of children dependent on respiratory support.”

Both Alex and Rebecca benefit from the comprehensive care. “There are an astounding number of resources,” says Alex’s mom. “Top to bottom, they have him covered.”

Rebecca’s mother also appreciates the comprehensive care. “The team approach is best,” she says. “They see her as a whole person. That is very comforting when you have many things going on. It is a huge strength that they see her as a child first and as a patient second.” Program and Clinic Coordinator Ann Marie Ramsey, R.N., M.S.N., C.P.N.P., helps make that comprehensive care possible. “We see the child in the context of a family living within the community,” Ramsey explains. “We treat the child as a whole human being.” She says they look at all the patients’ needs, including medical, developmental, educational, and social.

LARGEST PROGRAM IN THE COUNTRY

The program currently provides ongoing care coordination for more than 150 patients throughout the state. It serves the largest population of ventilator-dependent children within the state and is the largest program of its kind in the country. The program now partners with the Michigan Department of Community Health.

Some people are surprised to hear that the program isn’t limited to patients who already require breathing assistance. Doctors from around the state can refer patients early—before a patient even requires a ventilator—so the team has the opportunity to provide preliminary evaluations and discussions with families about their options, should the patient require support. Tsai explains that the team appreciates having the opportunity to talk to families and explain options before a patient is in a crisis situation.

BEING PREPARED

Ken Bandy, B.S., R.R.T., Manager, Respiratory Care, and Administrator, Home Ventilator Program, agrees with the need to see patients before they are ventilator-dependent. He says, “It is incredibly important to start providing input and support for the family before a mechanical ventilator is needed. It helps make the parents, the child, and the caregivers better prepared.”

That extra commitment to supporting the family shows in the comprehensive care. Alex’s mom describes their clinic visits by saying, “It’s not like a doctor’s visit. It’s like going to see a relative you only get to see a few times a year."