Pediatric Home Ventilator Program

Arkansas Children’s Home Ventilator Program

Mission Statement

The Arkansas Children’s Home Ventilator Program provides specialized care to children on any time of ventilator support, as well as children dependent on other respiratory technology, to enhance their quality of life through caregiver education, research and patient/family advocacy.

Who Are We?

Our care team manages the care of children who need various types of respiratory support at home such as ventilators, bi-level, CPAP, airway clearance devices and/or have a tracheostomy. The team includes:

• Physicians – Pulmonology, Neonatology, Critical Care and Otolaryngology (ENT)
• Nurses – pulmonary specialty nurses & advanced practice nurses
• Respiratory therapists
• Social workers
• Dietitians
• Child Life Specialist
• Psychologists
• Palliative Care team
• Other therapists (Physical, Speech, and Occupational)

Who Does The Program Help?

Children in the program require respiratory support at home to maintain stability and have diagnoses such as:

• Bronchopulmonary dysplasia
• Cerebral palsy
• Congenital central hypoventilation syndrome
• Neuromuscular disorders
  • Muscular dystrophy
  • Spinal muscular atrophy
  • Diaphragmatic weakness or paralysis
• Spina bifida
• Spinal cord injury
• Traumatic brain injury
• Bronchiectasis (non-cystic fibrosis)
• Interstitial lung disease
• Primary ciliary dyskinesia
• And many more!

What Services Are Provided?

A primary pulmonologist is assigned to each patient along with a team of knowledgeable and skilled professionals. The team will assist you and your primary care physician in obtaining medically necessary services and coordinating with other specialists.  Respiratory technology-dependent patients typically have Pulmonary Clinic visits every 3-4 months.  Telemedicine visits are available when appropriate.   Patients and families can reach the team via telephone or Epic MyChart during office hours and after hours via Pulmonary on-call when necessary.  Palliative Care is part of our team to support any child with a life-threatening or life-limiting diagnosis.

Research

Clinical-translational research is a priority of the program. Our clinicians collaborate in local and multi-center studies to examine the disease mechanisms that result in chronic respiratory failure and identify novel therapies.   In addition, the program prioritizes quality improvement initiatives to ensure that the highest standard of care is available for our patients.

Frequently Asked Questions

What can I expect at Pulmonary Clinic?

• The first visit may be longer than follow-up appointments.
• X-rays, pulmonary function, lab work or other testing may be done.
• You may see several different specialists in addition to the doctor such as the nurse, respiratory therapist, dietitian or social worker.
• Appointments every 3-6 months depending on your condition.
• We help coordinate appointments for patients to see Pulmonary, ENT and other specialists on the same day when possible.
• During clinic visits multiple aspects of care are addressed including:
  • How well the ventilator is supporting your child’s breathing, and if adjustments are needed
  • How well your child is breathing on their own and whether they are ready to reduce ventilator support
  • Resolve respiratory equipment issues
  • Discuss any unexpected safety events at home related to the tracheostomy or respiratory equipment
  • Review your child’s growth and nutrition
  • Encourage eating and speaking, if your child is able
  • Assist with in-home nursing support, if necessary
  • Help navigate school and community systems if issues arise

How do I make an appointment?

Call the Appointment Center at Arkansas Children’s Hospital (501) 364-4000.

What are ventilators and airway clearance therapy? Does my child need these?

• A ventilator is a machine that helps with breathing.
• A ventilator might be used only at night or up to 24 hours a day depending on the condition.
• Airway clearance therapy is the use of devices or techniques to help loosen and remove mucus from the lungs.
• Your doctor will discuss with you if any of these devices are needed.

How can the Social Worker help me?

• To provide emotional support
• To assist with problem-solving with financial and transportation obstacles
• To provide information about community resources and mental health needs
• To coordinate services with community agencies
• To address psychosocial issues and mediate family situations and conflicting dynamics that promote patient safety

How can I be involved?

• Family Advisory Board
• Annual Resource Day for Caregivers Event

For more information on how to support respiratory technology-dependent children, contact the Pulmonary Office at Arkansas Children’s Hospital.