The Pediatric Home Ventilator Clinic at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, provides comprehensive, long-term care for infants, children, and adolescents who require tracheostomies and mechanical ventilation in the home setting. Patients seen in the clinic may be continuously or partially ventilator dependent.

Our multidisciplinary team partners closely with families to deliver comprehensive, ongoing medical care and caregiver education. Many of our patients we begin treating as infants and will follow them throughout childhood and adolescence, providing continuity of care. We focus on optimizing respiratory support and advancing long-term goals such as decannulation (removal of a tracheostomy tube), communication and feeding, and growth and development. We also address equipment needs.

Our team works in close collaboration with inpatient teams in the neonatal and pediatric intensive care units at Johns Hopkins All Children’s to ensure a seamless transition from the inpatient to outpatient setting regarding ventilator management.

Why Choose Johns Hopkins All Children’s

Our multidisciplinary team includes:

• Pediatric pulmonologists with expertise in long-term ventilator management
• Respiratory therapists skilled in ventilator troubleshooting and support
• Speech-language pathologists (SLPs) experienced in communication strategies, feeding and swallowing concerns and speaking valve implementation
• Complex care nurse coordinators who provide comprehensive, ongoing support during and between clinic visits

Meet Our Team

Our team-based approach allows for real-time collaboration between families and the clinical team to develop a shared, individualized care plan. At each visit, we work together to address key aspects of your child’s respiratory care, including readiness for ventilator weaning, decannulation, and speaking valve trials.

As a clinic for children with complex respiratory conditions, we provide our patients with long-term, consistent care. Our nurse coordinators evaluate the patient’s need for durable medical equipment and work closely with the DME supplier to ensure timely delivery of equipment in the home setting. We also maintain strong partnerships with chronic care facilities in our community to support ventilator-dependent children living in those settings.

Conditions We Treat

The Pediatric Home Ventilator Clinic provides care for children with a wide range of diagnoses:

• Bronchopulmonary dysplasia (BPD), a chronic lung condition in babies born prematurely
• Airway and lung abnormalities, including tracheomalacia (floppy airway) and congenital diaphragmatic hernia (CDH)
• Neurologic injuries that affect breathing, such as brain injuries that interfere with normal breathing patterns
• Congenital central hypoventilation syndrome (CCHS), a condition that affects how the brain controls breathing
• Neuromuscular diseases, such as spinal muscular atrophy (SMA), which can weaken the muscles needed for breathing
• Genetic or developmental disorders that affect breathing, often as part of a broader medical condition

Services We Provide

• Monitoring of end-tidal carbon dioxide (CO₂) in clinic
• Adjustment of ventilator settings
• Ventilator titration studies in our sleep lab
• Speaking valve trials
• Home airway clearance devices such a therapy vest or cough assist
• Individualized treatment plans
• Collaboration with DME providers and chronic care facilities
• Active participation in research

Our Approach to Treatment

We take a family-centered, shared decision-making approach to care. We understand that each child’s experience with chronic ventilator support is unique, and we work closely with families to consider the full context of care, including daily routines, family support systems at home, transportation needs, home nursing, and overall quality of life.

Parents are essential members of the care team. We partner with you to create an individualized treatment plan that reflects both your child’s medical needs and your family’s values and goals. Whether we are discussing adjustments to ventilator settings, planning for speaking valve use, or evaluating readiness for weaning or decannulation, we ensure that decisions are made collaboratively, combining medical expertise with your lived experience as caregivers.

What to Expect

During your child’s visit, you can expect a coordinated, team-based approach tailored to their individual needs. Most appointments last between 45 minutes to one hour, depending on the complexity of care.

Each visit begins with an assessment by one of our respiratory therapists. They will review your child’s current ventilator settings and document key details about their respiratory equipment, including the ventilator type and tracheostomy size. They will also obtain an end-tidal carbon dioxide (CO₂) measurement to evaluate how effectively the ventilator is supporting your child’s breathing. If your child uses the ventilator only at night, please remember to bring it with you to clinic.

Next, your child will be seen by the pulmonologist, speech-language pathologist, and nurse coordinator. During this portion of the visit, we will complete a thorough medical history and physical exam. If appropriate, we may also perform a speaking valve trial, capping trial, or ventilator weaning trial with close monitoring of your child’s oxygen level, end-tidal CO₂, and breathing.

We will then partner with you to create an individualized treatment plan based on your child’s diagnosis and current needs. Some patients may be referred for a ventilator titration study in our sleep lab to optimize their settings. We also collaborate with our Ear, Nose, and Throat (ENT) colleagues for airway evaluation and tracheostomy management, and may recommend outpatient feeding therapy if there are concerns about growth or nutrition.

Before the visit concludes, our nurse coordinator will review the plan with you and confirm that all necessary equipment, supplies, and home services are in place. If new prescriptions or orders are needed for home equipment or nursing support, we will provide them directly to the appropriate providers.

We typically see patients every three to six months, with visit frequency adjusted based on your child’s condition and progress over time.

Location

The clinic is held in the morning on the first Wednesday, third Thursday, and fourth Monday of each month on the hospital's St. Petersburg campus:

Johns Hopkins All Children's Outpatient Care Center
601 5^th Street South, Suite C780
St. Petersburg, FL 33701

Learn more about this location, including parking information.

Referring a Patient to the Home Ventilator Clinic

To refer a patient to the clinic, please fax a referral with patient demographics and the last clinic note to 727-767-4218.

We also accept self-referrals from families whose child currently has mechanical ventilation. Please call 727-767-4146 for more information or to make an appointment.