Specialized Care to Assist Breathing: The Rainbow Advanced Breathing Center
The Advanced Breathing Center (ABC) at University Hospitals Rainbow Babies & Children’s Hospital is a highly specialized outpatient clinic. It is dedicated to helping children who require breathing assistance because of chronic lung disease, chest wall deformity, respiratory muscle weakness, diaphragm muscle problems or central hypoventilation. The multidisciplinary team provides all aspects of care for children that use mechanical equipment to help them breathe such as a ventilator, a BiPAP or CPAP machine or more advanced non-invasive ventilation technologies and devices. Children treated at the Rainbow ABC use long term or temporary noninvasive (facemask or nasal mask) or invasive (tracheostomy) mechanical ventilator assistance to support breathing.
At UH Rainbow Babies & Children’s, our team is at the forefront of advances on a national level through participation on national leadership committees and on research studies. Our dedicated, multidisciplinary care team has specialized pediatric experience with all types of ventilation strategies which will be individualized to best meet the breathing needs of your child. The team includes pediatric pulmonary physicians and nurses, pediatric ENT airway specialists, respiratory therapists, medical equipment experts, dedicated pediatric pulmonary pharmacist, home care specialists and nutritionists. For children with the most medically complex conditions, we coordinate with the Rainbow Comprehensive Care team and providers at other facilities like Hattie Larlham, to collaborate care and address everything you and your child require.
Care for a Wide Range of Conditions
Any number of problems and diseases can damage breathing to the point that mechanical assistance is needed for survival. Our technology assisted center cares for children of all ages to meet any and all challenges for needing ventilator or BiPAP supported breathing. The center treats children affected by a wide range of problems, including but not limited to:
- Spinal muscular atrophy (SMA)
- Muscular dystrophy (MD)
- Spinal cord injury
- Airway malformations
- Pulmonary hypoplasia
- Chronic lung disease of prematurity - bronchopulmonary dysplasia (BPD)
- Severe scoliosis
- Sleep apnea
- Congenital central hypoventilation syndrome (CCHS)
- Neurologic injury
- Neuromuscular weakness
Support for Families Caring for Children who Require Breathing Assistance
When visiting the center, children and their families receive a variety of supportive services, including:
- Complete physical assessment
- Oxygen and carbon dioxide measurement
- Respiratory muscle strength measurement
- Lung capacity measurement
- Cough effectiveness assessment and assistance with measures to enhance cough
- Ventilator mask or tracheostomy assessment
- Ventilator equipment and supplies inventory and coordination of care with home equipment provider
- Ventilator setting adjustment and individualized home ventilation plan
- Immunization review and other measures to reduce lung infections
- Nutrition assessment with specialized dietitian
- Medication review
- Coordination with other specialists: sleep medicine, spine and chest wall specialists, tracheostomy specialists, gastrostomy tube specialists, anesthesiologists, cardiologists, diaphragm pacing team, social workers and speech and physical therapists
- Answering questions and providing training for care-givers and home nurses, accessing resources
- The Rainbow Family Resource Center is a multimedia library. There, parents find ideas and information on a variety of topics related to healthcare, family life, community resources and much more. Our Health Information technologist can also assist in locating general information regarding a child’s particular health issues.
Specialized Training for Patients and Families at The Rainbow Family Learning Center
Families receive training to care for children that use equipment to assist breathing. Skilled nursing is normally a part of the home care support team, but enormous challenges still remain for families caring for children using ventilators or other mechanical devices at home to assist breathing and enhance cough.
The Rainbow Family Learning Center provides the opportunity for caregivers to learn and practice special skills they will need to perform at home.
Pediatric pulmonologists, critical care physicians, respiratory therapists, pulmonary nurses and dietitians staff the center. They are trained to monitor the child’s health, identify and solve problems and provide ongoing family education and training. They also provide access to social workers who help coordinate home services, help with insurance and financial issues and connect families with additional supportive services and resources.
Caring for a child in need of technology assisted breathing requires intensive commitment and attention to detail. The center was developed to help families be the best caregivers they can be, and help them maintain a healthy, supportive and balanced lifestyle.
Request an Appointment
Request an appointment with a pediatric pulmonologist or call 1-866-UH4-CARE.