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• Dedication
• Preface
• Acknowledgments
• Contents
• Contributors
• Chapter 1: Chronic Ventilator Support in Children: Why, Who, and When
• Introduction
• Why?
• Who?
• When?
• Conclusion
• References
• Chapter 2: Non-Invasive Mechanical Ventilation in Children: An Overview
• Hypoventilation
• Children with Normal Lung and Respiratory Pump Function with Abnormal Respiratory Drive
• Children with Lung Disease and/or Respiratory Pump Impairment with Normal Respiratory Drive
• Evaluation of Ventilation and CO2 Homeostasis
• Noninvasive Treatment of Hypoventilation
• Continuous Positive Airway Pressure
• Bi-level Positive Airway Pressure
• High-Flow Nasal Therapy
• Noninvasive Positive Pressure Ventilation During Wakefulness
• Introducing Noninvasive Positive Pressure Ventilation
• Benefits of Noninvasive Positive Pressure Ventilation
• Complications of Noninvasive Ventilation
• Future Considerations
• References
• Chapter 3: Chronic Invasive Mechanical Ventilation
• Introduction
• Ventilator Settings and Mechanics of Breathing
• Modes of Mechanical Ventilation
• Application of Different Modes of Mechanical Ventilation
• Characteristics of Home Ventilators
• Complications of Invasive Home Mechanical Ventilation
• Outcomes of Children Supported by Positive Pressure Ventilation via Tracheostomy
• Conclusion
• References
• Chapter 4: Ethical Considerations in Chronic Invasive Mechanical Ventilation in Pediatrics
• Introduction
• Before Consent
• Bridge or Destination?
• What Is the Role of Nonclinical Factors in the Decision?
• Are Community Supports in Place?
• The Informed Consent Process
• During Chronic Care of the Child and Family
• Special Considerations in Special Populations
• Teenagers with Intact Cognition
• Infants with Severely Damaged Cognition or Multiple Sensory Deficits
• Conclusion
• Chapter 5: Palliative Care and End-of-Life Considerations in Children on Chronic Ventilation
• What Children on Chronic Ventilation and Their Families Want and Need
• What Is Palliative Care and Why It Is Applicable to Children on Chronic Ventilation and Their F
• The Challenges of Palliative Care and Advance Care Planning
• Addressing These Challenges and Talking About End-of-Life Topics
• References
• Chapter 6: Transition from Hospital to Home
• Introduction
• Benefits of Going Home
• Enhanced Psychosocial Development and Quality of Life
• Reduced Cost
• Risks of Providing Care at Home
• Risk of Mortality
• Inadequate Home Nursing Care
• Caregiver Stress, Fatigue, and Financial Loss
• Lack of Community and Financial Resources
• Alternative Sites of Care
• Multidisciplinary Team Approach to Discharge
• Team Composition
• Responsibilities of the Team
• Communication with Caregivers
• Pre-discharge Criteria
• Medical Stability of Child
• Identification and Assessment of Caregivers
• Evaluation of Home Environment
• Assessment of Available Financial Resources
• Availability of Home Equipment and Nursing Care
• Primary Care Provider and Pulmonologist
• Home Medical Equipment and Supplies
• Home Nursing
• Preparing the Caregivers
• Establish Expectations
• Caregiver Education
• Caregiver In-hospital Stays
• Transportation Plan
• Emergency Plan for Home
• Preparing the Home
• Preparing for Outpatient Care
• Child Life Education Specialists
• Preparation for School-Based Education
• Outpatient Medical Team and Clinic Visits
• Count Down to Discharge Day
• Communicate Expectations
• Transportation and Arrival Home
• Barriers to Discharge
• Future Needs
• References
• Chapter 7: The Model of Care for the Ventilator-­Dependent Child
• Chapter Objectives
• Why Is This Chapter Important?
• Introduction to Care Models for Ventilator-Dependent Children
• The Medical Home for the Ventilator-Dependent Child
• How the System of Healthcare Appears to the Ventilator-­Dependent Child
• Ensuring Family-Centered Care for the Ventilator- Dependent Child
• National Priorities: The Maternal and Child Health Bureau Six Core Outcomes for CYSHCN
• Operationalizing Care Models for Ventilator-Dependent Children: The Current State
• Co-Management between Primary and Specialty Care: Building the Family-Centered Gold Standard
• Implementation of Collaborative, Co-Management Care between Primary and Subspecialty Care
• Summary
• References
• Chapter 8: Outpatient Care of the Ventilator Dependent Child
• Introduction
• The Importance of the Care Team
• Respiratory Care in the Outpatient Clinic
• Smoking and Secondhand Smoke
• Infection
• Cardiology
• Orthopedic Problems/Scoliosis
• Nutrition in Patients Requiring Chronic Ventilator Support
• Dentistry
• Social Work and Community Resources
• Transition to Adult Care
• References
• Chapter 9: In-Home Care of the Child on Chronic Mechanical Ventilation
• Introduction
• Preparation for Mechanical Ventilation of a Child at Home
• Proper Preparation of Caregivers
• Preparation of Family Caregivers
• Preparation of Homecare Nurses
• Preparation by Nursing Agencies
• Monitoring Mechanically ventilated Children in the Home
• Monitoring Devices
• The Human Factor
• Nurses
• Family Caregivers
• Alternate Caregivers
• Preventing Accidental Deaths of Ventilator-Dependent Children in the Home
• Proper Emergency Response by Caregivers
• Psychosocial Aspects of Care in the Home
• Achieving Normalcy
• Traveling Outside of the Home
• Legal Issues
• Outcomes
• Mortality Rates
• Barriers to Improving Outcomes
• Interventions for Improving Outcomes
• Summary
• References
• Chapter 10: Troubleshooting Common Ventilator and Related Equipment Issues in the Home
• Introduction
• The Mechanical Ventilator
• Ventilators
• Ventilator Alarms
• Low-Pressure Alarms
• Low Exhaled Minute Volume Alarm
• High-Pressure Alarms
• High Exhaled Volume Alarm
• Apnea Alarm
• Disconnect Alarm
• Low Battery Alarm
• Low Power/Power Failure Alarm
• Ventilator Circuits
• Batteries
• Interface
• Tracheostomy Tubes
• Noninvasive Ventilation Interfaces
• Humidification
• Heated Humidifiers
• Heat Moisture Exchangers
• Humidification with Noninvasive Ventilation
• Oxygen
• Liquid Oxygen System
• Oxygen Concentrators
• Oxygen Cylinders
• Monitoring
• Pulse Oximeter
• End-tidal CO2 Monitor
• Apnea Monitor
• Additional Equipment in the Home
• Suction Machine
• Resuscitation Bag
• Resources When Equipment Fails
• Emergency and Disaster Preparedness
• Emergency Generators
• Emergency Plans
• Summary and Future Research Needs
• References
• Chapter 11: Inhaled Drug Delivery for Children on Long-term Mechanical Ventilation
• Background
• A Brief Primer on Principles of Respiratory Aerosol Delivery
• Delivery Devices
• Patients Receiving Mechanical Ventilation Who Do Not Tolerate Being Disconnected from the Ventila
• Metered-Dose Inhalers
• Nebulizers
• Patients Receiving Invasive Mechanical Ventilation Who Tolerate Being Disconnected From the Venti
• Metered-Dose Inhaler
• Nebulizers
• Patient Receiving Noninvasive Mechanical Ventilation Who Do Not Tolerate Being Disconnected from t
• Metered-Dose Inhaler
• Nebulizer
• Patients Receiving Noninvasive Mechanical Ventilation Who Tolerate Being Disconnected from the Ve
• Clinical Key Points
• Summary
• References
• Chapter 12: Adherence to Non-Invasive Ventilatory Support
• Introduction
• Obstructive Sleep Apnea and Continuous Positive Airway Pressure
• Noninvasive Ventilation
• The Importance of Knowledge About Adherence to Respiratory Support
• Principles of Adherence in Children and Adolescents
• Adherence to CPAP in Children
• Functional Correlates of Adherence to CPAP
• Patterns of Adherence to CPAP
• Predictors of Adherence to CPAP
• Age
• Comorbidity
• Parent and Family Factors
• Barriers to Use
• Disease Modification
• Technical Variables
• Adherence to Noninvasive Ventilation
• Improving Adherence
• Conclusions
• References
• Chapter 13: Ventilator Support in Children with Obstructive Sleep Apnea Syndrome
• Introduction
• Pathophysiological Mechanisms of OSAS
• Functional Considerations
• Ventilatory and Chemical Drive
• Ventilatory Response to Inspiratory Loading
• Arousal
• Neuromotor Tone and Its Evaluation
• Anatomical Considerations
• Infancy
• Childhood
• Adolescence
• Ventilatory Support in Children with OSAS
• Mechanism of PAP Ventilation in OSAS
• Forms of PAP Ventilation and Technical Considerations
• Indications for PAP Ventilation
• OSAS in Otherwise Healthy Children
• OSAS Associated with Obesity
• Residual OSAS After AT
• OSAS Associated with Laryngomalacia
• OSAS Associated with Craniofacial Malformations and Genetic Disorders
• Craniosynostosis
• Pierre Robin Sequence
• Achondroplasia
• Down Syndrome
• Prader-Willi Syndrome
• OSAS Associated with Altered CNS Function
• Neuromuscular Disorders
• Congenital Central Hypoventilation Syndrome
• Chiari Malformation
• Cerebral Palsy
• Miscellaneous
• Mucopolysaccharidosis (MPS)
• OSAS in Children That Are Not Candidates for AT
• Efficacy of PAP Ventilation
• Adherence to PAP Ventilation
• Adverse Effects of PAP Ventilation
• Alternative Treatments to PAP Ventilation
• Medications
• Treatment with Nasal Insufflation
• Nasal Expiratory Positive Airway Pressure (EPAP) Device
• Oral Appliances
• Rapid Maxillary Expansion
• Complex Upper Airway Surgery
• Tracheotomy
• Future Directions
• References
• Chapter 14: Ventilator Support in Children with Neuromuscular Disorders
• Introduction
• Pathophysiology
• Assessment of Respiratory Function in Neuromuscular Disorders
• Sleep Studies
• Aims of Ventilatory Support
• Timing of Initiation of Nocturnal NIV
• Choice of Ventilator and Mode
• Interface
• Titrating Settings
• Monitoring Efficacy of Ventilator Support
• Acute Chest Infections
• Cough Assistance
• Progression to Tracheostomy Ventilation
• Palliative NIV/Ethics
• References
• Chapter 15: Long-Term Ventilator Support in Bronchopulmonary Dysplasia
• Epidemiology of Bronchopulmonary Dysplasia
• Respiratory Phenotypes in the Preterm Child with BPD
• Ventilator Management in the Preterm Child with Bronchopulmonary Dysplasia
• Other Home Ventilation Management Issues
• Comorbidities Affecting Ventilator Management
• Conclusions
• References
• Chapter 16: Chronic Ventilatory Support for Children Following Trauma or Severe Neurologic Injury
• Introduction
• Mechanisms of Injury
• Traumatic Brain Injury
• Spinal Cord Injury
• Thoracic Injuries
• Development of Chronic Respiratory Failure Following Trauma
• Reduce the Respiratory Load
• Increase Ventilatory Muscle Power
• Improve Central Respiratory Drive
• Philosophy of Chronic Ventilatory Support
• Modes of Ventilation
• Portable Positive Pressure Ventilator via Tracheostomy
• Noninvasive Positive Pressure Ventilation
• Diaphragm Pacing via Phrenic Nerve Stimulation and Diaphragm Muscle Pacing
• Respiratory Treatments
• Bronchodilators/Beta Adrenergic Agonists
• Respiratory Muscle Training
• Nutrition
• Dysphagia Evaluation
• Follow-Up Studies and Monitoring
• Polysomnography
• Echocardiogram
• Monitoring for Sleep Issues and Sleep-Related Breathing Disorders
• Monitoring for Scoliosis and Restrictive Lung Disease
• Conclusion
• References
• Chapter 17: Care of the Child with Congenital Central Hypoventilation Syndrome
• Pathophysiology
• Genetics
• Effect of Sleep State
• Mechanoreception
• Clinical Presentation
• Autonomic Dysfunction
• Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction
• Evaluation and Diagnosis
• Assessment of Hypoventilation
• Screening for Autonomic Dysfunction
• Management
• Goals of Care
• Ventilation
• Positive Pressure Ventilation via Tracheostomy
• Noninvasive Bi-level Positive Airway Pressure
• Negative Pressure Ventilation
• Diaphragmatic Pacing
• Ongoing Care and Monitoring
• Screening for Medical Comorbidities Associated with CCHS
• Genetic Counseling
• Home Care and Nursing Support
• Social Issues and Quality of Life
• Perioperative Care
• Pregnancy
• Long-Term Prognosis
• Future Directions
• References
• Index