Learning to care for a child with a tracheostomy and home ventilator is a journey. Our team has an educational program that includes bedside training with nursing and respiratory care staff, classroom based respiratory equipment sessions, teach back opportunities, simulation opportunities, and rooming in care experiences (known as Independent Care).
The following Stepping Stones to Discharge outlines the goals that are part of the training to take care of a child with a tracheostomy and home ventilator. Along with the stepping stones to discharge, below is a link to our caregiver agreement which outlines the expectations we have for our trach team members and caregivers throughout their journey in our program.
Educational Videos
The following videos are a resource to use when completing training and that you can reference at any time. These videos correspond to the written education provided to you in your Care Notebook that you received from your trach vent team.
Educational videos
Glossary and FAQs
As you care for your child who has a tracheostomy, you’ll learn about a lot of medical terms. Our glossary and list of frequently asked questions can help you navigate this new language.
Community Resources
Children with tracheostomy, with or without a home ventilator, require support, and care from many different community resources. Learn about private duty nursing, equipment, therapy and school services.
Your Care Team
The most important members of your care team are you – the parent – and the caregivers. As a parent, you know your child's needs better than anyone. Your role on the care team is to share information about your child, ask questions and actively learn about the care your child needs.
The trach team members listed below will work with you and the caregivers during your hospital stay and after you go home.
Pulmonologists
A pulmonologist (specializes in care of the lungs) is the doctor directing the medical care once your child goes home. The pulmonologist works closely with other team members and your primary care doctor or pediatrician to assure that your child receives ongoing care.
The pulmonologist will see your child each time you return to Tracheostomy clinic and will determine the plan for your child's future care.
Ent (Ear, Nose, and Throat) Providers
The ENT doctor (specializes in the care of the airway) is the doctor who performed the surgery to insert your child's tracheostomy.
The ENT doctor works closely with the pulmonologist and the members of the trach team as your child prepares to go home.
The ENT doctor or nurse practitioner will see you as you return to the Tracheostomy clinic to monitor your child's airway and tracheostomy, as well as determine the ongoing plan for your child's future care.
Care Managers: Clinical Nurse Specialist (CNS)/Nurse Clinician (NC)
Each time you and your child visit the Tracheostomy Home Ventilator Program, the CNS or NC will meet with you to review your plan of care and answer any questions you may have.
The CNS and NC work closely with the other team members to help manage your child's care and support you in transitioning your family and your child from hospital to home.
Registered Nurse
Your child will be cared for by Registered Nurses in our intensive care units and throughout the hospital who will help provide direct patient care and teaching to you and your child.
Nurses are also involved in your child's care in the outpatient setting in both our Pulmonary and ENT clinics. They will assist you and your child with questions or concerns that arise after you are home through our phone triage nurse call line. These nurses will also visit with you and your child in our outpatient clinic visits and help update your child's history and plan of care.
Trach/Vent Respiratory Care Practitioner (RCP) or Respiratory Therapist (RT)
A trach/vent RCP works with your family as the contact between the Durable Medical Equipoment (DME) provider or home care company and the hospital.
The RCP completes all your equipment teaching, including home suction machine, oxygen set up, humidification system and ventilator.
When you return to the Tracheostomy Clinic, the RCP will meet with you to review your equipment, make adjustments, initiate trials and answer questions.
Additional Members
Additional members of your team include an inpatient care manager, a speech and language pathologist and a dietitian.