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Home Ventilators

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Overview

Advances in technology have allowed mechanical ventilation to increasingly be used at home for long-term management of chronic respiratory failure secondary to many causes in children. Home-care ventilators provide long-term mechanical ventilation with machines approved for infants as small as 2.5 kg.
Mechanical ventilators generally provide a series of consecutive functions that turn energy into a mechanical output, either by applying positive-airway pressure to the airways or sub-atmospheric pressure externally to the chest, as in negative-pressure ventilators. Positive-airway pressure ventilators are more widely used than negative-pressure ventilators. Information regarding non-invasive ventilation can be found at bi-level positive airway pressure support and tracheotomy.

ICD-10 Coding

Z99.11, Dependence on home respirator (ventilator) status
J96.10, Chronic respiratory failure, unspecified whether with hypoxia or hypercapnia
J96.11, Chronic respiratory failure with hypoxia
J96.12, Chronic respiratory failure with hypercapnia

Prevalence

The number of pediatric patients relying on home ventilators is unknown but perceived to be growing; 8% of children who use home respiratory equipment and supplies have a ventilator. [Sahetya: 2016] [Berry: 2019]

Practice Guidelines

Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, Finder JD, Ackerman VL, Arens R, Boroughs DS, Carter J, Daigle KL, Dougherty J, Gozal D, Kevill K, Kravitz RM, Kriseman T, MacLusky I, Rivera-Spoljaric K, Tori AJ, Ferkol T, Halbower AC. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. [Sterni: 2016]

Indications for Home-Ventilator Use

Chronic respiratory failure may result from a myriad of congenital or acquired respiratory and neurological conditions, including chronic lung disease of prematurity, congenital airway malformations, hypoventilation syndrome, neuromuscular diseases, and spinal cord injuries. These patients usually have advanced pulmonary or neurologic diseases leading to insufficient minute ventilation to maintain normal ventilation and oxygenation. The severity and needs of mechanical ventilatory support may range from solely during sleep to continuous support around the clock.

Initiation Processes

Long-term mechanical ventilation usually is initiated in the hospital with consultations from the pulmonary and otolaryngology teams. The American Thoracic Society has proposed standardized criteria for the discharge of a child on invasive mechanical ventilation to home. In general, the patient must be medically stable for discharge and have:
  • A minimum of 2 family caregivers who demonstrate willingness and ability to care for the child
  • All required services must be covered by insurance or other defined means
  • A home-care supplier identified to provide the necessary medical equipment for home

Caregiver Education for Home Ventilator Use

Prior to discharge, caregivers are given class instruction and bedside education about:
  • Anatomy, the disease process, and special considerations for the patient
  • The type of tracheostomy tube the patient has, suctioning the patient, and how to care for the tracheostomy, along with airway care, maintaining the stoma site, cleaning, infection control, and proper securement of the tube
  • CPR education and demonstration using a self-inflating manual resuscitation bag
  • The ventilator, troubleshooting, set-up, circuit changes, and recognizing alarms are covered prior to discharge.
All areas of discharge criteria are taught, and the home caregivers then demonstrate what they have learned for the instructor. They need to attend all classes and demonstrate competency in each area to ensure they can provide the necessary care for the child. The caregiver competency is documented in the patient’s chart. Additional educational reference materials are provided for the families, along with provider contact information.

Role of the Home-Care Supply Company

A standard checklist for tracheostomy and ventilator supplies is provided to the home-care supply company for home delivery. This includes the home ventilator, tracheostomy supplies, a humidification system, suctioning machines, oxygen concentrator, and portable oxygen tanks. The equipment is supported by the home-care supply company who also provides education to families about the equipment. There needs to be adequate space at home to ensure all equipment is easily accessible and maintained. The home equipment allows the child to be cared for at home and enables the families to travel with the child. When a patient travels, a special wheelchair or equipment is needed for all equipment to be secured during travel.

Deciding Not to Initiate Use

Many of the children who are dependent on long-term mechanical ventilation have other severe medical conditions that result in functional limitations, medical fragility, and shortened life expectations. Mechanical ventilators can only support respiratory function; they demand constant, burdensome, complex care at home. It may be morally and legally permissible to forgo long-term mechanical ventilation and allow natural death for children with life-limiting conditions. Providers should present families with comprehensive, balanced information on the impact of long-term mechanical ventilation and explore the option of not initiating in those children with profoundly serious and life-limiting conditions.

Follow-Up

Children with a tracheostomy on long-term mechanical ventilation qualify as children with special health care needs services program. They represent the extreme end of the spectrum with respect to their complexity, care intensity requirements, service needs, and risk of adverse outcomes. The American Thoracic Society feels that the most successful care model for this population is the collaborative generalist and subspecialties comanagement model. Delineation of who is responsible for what aspects of care is important. For example, the generalist would be responsible for all aspects of primary care; the otolaryngology team would help with tracheostomy care and needs; and the pulmonary team would be responsible for the management of all pulmonary and related aspects of care, such as airway clearance therapies. Families need to know whom to call for each aspect of the child’s care.

Role of the Medical Home

If there is a multidisciplinary team overseeing the care of children on home ventilators, the family may not identify the primary care provider as the medical home for the child. The primary care clinician can support families by writing orders and advocating for private duty nursing, durable medical equipment, therapy, and special education services. They can coordinate primary care and subspecialty appointments and provide age-appropriate anticipatory guidance and preventive care, including immunizations. [Sobotka: 2019] [Sterni: 2016] The primary care clinician can also help elucidate the family’s preferences for the child’s quality of life while ensuring that the care is family and patient-centered.

Use of Polysomnogram

The potential benefits of using overnight Sleep Studies/Polysomnography (see UT providers [6])sleep studies include:
  • Optimizing ventilation and oxygenation by making adjustments to ventilator settings in real-time during sleep
  • Allowing assessments of leaks, patient-ventilator synchrony, respiratory effort, oxyhemoglobin saturations, and CO2 levels
  • Assessing readiness to be decannulated and/or weaned
  • Transitioning to non-invasive ventilation.
These overnight sleep studies are performed in a safety-controlled environment either in the hospital or an outpatient sleep laboratory.

Complications

Children dependent on long-term mechanical ventilation are at risk for complications directly related to their underlying medical conditions, including recurrent respiratory infections, poor growth, pulmonary hypertension, developmental delay, and life-threatening emergency events such as tracheostomy plugging, accidental decannulations, and other causes of cardio-respiratory arrest. Routine tracheostomy care and equipment checks by the home equipment suppliers, along with follow-up with medical providers, are important. See Tracheostomy.

Weaning from Mechanical Ventilation

There are no universally agreed-upon protocols for weaning and liberating children from chronic mechanical ventilation. However, ventilator weaning may be considered when the initial indications for chronic respiratory support have resolved and other medical comorbidities become stable, along with considerations of the child’s functional status. Weaning is usually initiated by the pulmonary team in collaboration with the caregivers and other medical specialty teams that cared for the child. Close monitoring would be necessary to determine readiness for weaning of ventilator support. In certain patient populations, ventilator support may also be transitioned from invasive to non-invasive modalities, such as bi-level positive airway pressure support via a nasal or oro-nasal interface. The process of Tracheostomy decannulation is discussed separately on the Medical Home Portal. Also, see CPAP & BIPAP Therapy for Children.

Resources

Information & Support

Tracheostomy

For Professionals

Caring for the Ventilator Dependent Child: A Clinical Guide
A book for clinicians caring for children who are dependent on a ventilator, and who often have complex health care needs and are at high-risk of serious complications.

Introduction to Mechanical Ventilation (YouTube)
Video introduction to mechanical ventilation for house officers rotating in the Intensive Care Unit. Basics of fully supported modes (Assist/Control, PRVC) and weaning modes (CPAP, PS, T-tube trial). Not pediatric-focused; Richard Savel, MD, FCCM, Director of Surgical ICU at Maimonides Medical Center, 2015.

American Association for Respiratory Care
Professional membership organization for respiratory therapists with links to many protocols as well as training and advocacy.

For Parents and Patients

What To Do If Your Child's Ventilator Malfunctions (YouTube)
A 4-minute video for families with step-by-step instructions for what to do if your child's ventilator malfunctions while at home; Children's Hospital Colorado.

Utah's Eight Medicaid HCBS Waivers
Utah Medicaid Home and Community Based Service (HCBS) waivers explained by the Utah Department of Health & Human Services (UDHHS) (Formerly UDOH). States are allowed flexibility in providing services to people living in community settings through the “waiver” of certain Medicaid statutory requirements.

Patient Education

Using a Home Ventilator with a Child (American Thoracic Society) (PDF Document 344 KB)
A 2-page, printable, colorful patient education handout about heading home with a child on a ventilator.

Tools

Ventilation of Pediatric Patients Workshop
This Intermountain Healthcare workshop covers basic instruction in the use of home ventilators. The intended audience is healthcare providers who care for ventilated pediatric patients.

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Simulation Training in the Pediatric Tracheostomy and Home Ventilator Population
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Helpful Articles

Gregoretti C, Navalesi P, Ghannadian S, Carlucci A, Pelosi P.
Choosing a ventilator for home mechanical ventilation.
Breathe. 2013;9(5):394-409. / Full Text

Edwards JD, Panitch HB, Nelson JE, Miller RL, Morris MC.
Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.
Ann Am Thorac Soc. 2020;17(1):72-80. PubMed abstract / Full Text
This study identified the informational and decision-making needs that parents felt are important when deciding about long-term ventilation. Data suggest that providers should present families with comprehensive, balanced information on the impact of long-term ventilation and, when the child has a profoundly serious and life-limiting condition, explore the option not to initiate long-term ventilation.

Henningfeld JK, Maletta K, Ren B, Richards KL, Wegner C, D'Andrea LA.
Liberation from home mechanical ventilation and decannulation in children.
Pediatr Pulmonol. 2016;51(8):838-49. PubMed abstract
This study describes our experience liberating tracheostomy and home mechanical ventilation (HMV)-dependent children from respiratory technologies. Five major steps (tracheotomy, initiation of HMV, initiation of tracheostomy collar trials, HMV independence, and decannulation) performed in conjunction with clinic visits, procedures, and home nursing support were integral in the successful decannulation process.

Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, Finder JD, Ackerman VL, Arens R, Boroughs DS, Carter J, Daigle KL, Dougherty J, Gozal D, Kevill K, Kravitz RM, Kriseman T, MacLusky I, Rivera-Spoljaric K, Tori AJ, Ferkol T, Halbower AC.
An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation.
Am J Respir Crit Care Med. 2016;193(8):e16-35. PubMed abstract / Full Text
This guideline reviews collaborative caregiver, generalist, and subspecialist Medical Home comanagement for the care of children requiring chronic invasive ventilation. The guideline suggests standardized hospital discharge criteria and outlines equipment for monitoring, emergency preparedness, and airway clearance.

Gillen JK, Morris MC.
Preparing Families of Technology-Dependent Children for Emergencies.
Hosp Pediatr. 2019;9(11):874-879. PubMed abstract
This study characterized the baseline level of emergency preparedness among families of technology-dependent children admitted to the PICU and found that an ICU-based planning intervention can sustainably improve families' disaster preparedness.

Authors & Reviewers

Initial publication: June 2020
Current Authors and Reviewers:
Authors: Chee Chun Tan, MD, MS
Mischelle Fryer, MSRT, NPS-RRT

Page Bibliography

Berry JG, Goodman DM, Coller RJ, Agrawal R, Kuo DZ, Cohen E, Thomson J, DeCourcey D, DeJong N, Agan A, Gaur D, Coquillette M, Crofton C, Houtrow A, Hall M.
Association of Home Respiratory Equipment and Supply Use with Health Care Resource Utilization in Children.
J Pediatr. 2019;207:169-175.e2. PubMed abstract
Compares healthcare use and spending for children using vs. not using respiratory medical equipment and supplies.

Sahetya S, Allgood S, Gay PC, Lechtzin N.
Long-Term Mechanical Ventilation.
Clin Chest Med. 2016;37(4):753-763. PubMed abstract
This article reviews the equipment and logistics involved with ventilation outside of the hospital. Discussed are common locations for long-term ventilation, airway and secretion management, and many of the potential challenges faced by individuals on long-term ventilation.

Sobotka SA, Gaur DS, Goodman DM, Agrawal RK, Berry JG, Graham RJ.
Pediatric patients with home mechanical ventilation: The health services landscape.
Pediatr Pulmonol. 2019;54(1):40-46. PubMed abstract
Assesses health service structures, providers, and programs caring for this population throughout the US in order to understand barriers to high-quality care for children with invasive home mechanical ventilation.

Sterni LM, Collaco JM, Baker CD, Carroll JL, Sharma GD, Brozek JL, Finder JD, Ackerman VL, Arens R, Boroughs DS, Carter J, Daigle KL, Dougherty J, Gozal D, Kevill K, Kravitz RM, Kriseman T, MacLusky I, Rivera-Spoljaric K, Tori AJ, Ferkol T, Halbower AC.
An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation.
Am J Respir Crit Care Med. 2016;193(8):e16-35. PubMed abstract / Full Text
This guideline reviews collaborative caregiver, generalist, and subspecialist Medical Home comanagement for the care of children requiring chronic invasive ventilation. The guideline suggests standardized hospital discharge criteria and outlines equipment for monitoring, emergency preparedness, and airway clearance.