Home Ventilation Program

Riley at IU Health has one of the largest pediatric home mechanical ventilation programs in the world. Our clinic was founded in 1984 and is the only comprehensive clinic of this type in the state of Indiana where children and young adults who need respiratory support at home are followed on a regular basis. Over the years, we have successfully discharged to their homes over 700 infants, children and adolescents who require part-time or full-time mechanical assisted ventilation. This enhances their quality of life by allowing them to participate more fully in their family life, go to school and go on family vacations.

While we provide families with the tools (medical technology and expertise) to make this work, it is the creativity and courage of the families who fashion these tools to create meaningful lives for their children.

We believe that you are the most important member of your child’s care team. You know your child’s needs better than anyone. Your role on the care team is to share information about your child with other care team members, ask questions and actively learn about the care your child needs.

Home ventilation care team members include:

• Pulmonologist and sleep medicine specialist. These two experienced doctors work with you and your child’s primary care doctor to develop an individualized treatment plan for your child.
• Home Ventilation Program coordinator. This registered nurse works closely with the other team members to help manage your child’s care and supports you in transitioning your family and your child from hospital to home. The coordinator will review your care plan and answer any questions you have during your follow-up visits.
• Pediatric nurse practitioner. This nurse specializes in managing your child’s care with a tracheostomy and ventilator while your child is in the hospital. The nurse practitioner helps you understand your child’s care plan before leaving the hospital and monitors your child’s care at home.
• Home care clinical specialist. Our registered respiratory therapist works with your family as the contact between the ventilator provider or home care company and the hospital. The respiratory specialist also helps you learn how to use the ventilator equipment, including the home suction machine, oxygen setup and humidification system.
• Licensed social worker. Our dedicated social worker is specially trained to provide support and advocacy and will help you access community resources such as lodging and support groups.

Inpatient Ventilation Care

Our inpatient Home Ventilation Program is conveniently located within the pediatric intensive care unit (PICU) at Riley at IU Health. This helps our team start discharge planning early in the patient’s hospitalization which decreases length of stay. Our team works with at least two of your child’s caregivers to provide appropriate education in all aspects of medical care to best meet your child’s needs.

We provide multidisciplinary, comprehensive training and support to optimize every aspect of our patients’ environment, from selecting the most appropriate portable ventilation equipment to helping establish a medically and socially safe environment at home. Our support is ongoing: We will work with you to help your child achieve optimal growth and development, minimize hospital visits and improve quality of life.

Outpatient Ventilation Care

A key part of a successful home ventilation plan is quality outpatient care. We see our patients monthly once they are transitioned to home. Once their condition improves or stabilizes, we see them less frequently. Outpatient visits take place in the Pulmonary Medical Service Area of the Riley at IU Health Outpatient Center.

Clinic evaluations include a comprehensive history and physical examination, assessment of growth, measurements of oxygenation and ventilation and, when possible, other measurements of lung function. We also maintain ongoing communications with the primary care providers and other subspecialists involved in your child's care.