Welcome to the pediatric otolaryngology tracheostomy program at UC Davis Children’s Hospital. This information has been developed for parents and caregivers of children with tracheostomies. The goal is for you to feel comfortable caring for your child at home.
For people with a tracheostomy, the way air flows into the lungs is changed. Because of the change of air flow, the voice box is affected in two ways.
First, being able to keep the lungs moist becomes hard, as the moisture in the nose and mouth warms the air with normal respiration. Moisture is very important to the windpipes because without it, the windpipes become sticky and dry. Mucus can dry out and block the windpipes, so extra attention to humidification is important.
Second, because of the redirection of airflow your child will not make sounds/speech until they are cleared to do finger occlusion, use a speaking valve or tracheostomy cap. It will be important for you and your child to find ways to communicate.
For infants, facial expressions and body movements are their form of communication. For young children, learning some sign language may be helpful. For older children who can write or type, paper and pencil or a tablet may be useful for communication.
Otolaryngologists (pronounced oh/toe/lair/in/goll/oh/jists) are doctors trained in the medical and surgical treatment of ear, nose, and throat (ENT) problems. We commonly refer to them as ENT surgeons. The ENT surgeon performs the tracheotomy (surgical technique to create the stoma or opening in the neck) and places the tracheostomy tube. After hospital discharge you will see your ENT surgeon for follow-up 1 to 2 times per year.
Nurse practitioners have advanced training beyond their early preparation as a registered nurse and have completed a masters or doctoral program. Our nurse practitioners also have specialized training in pediatrics. The nurse practitioner will help to co-manage your tracheostomy care along with the ENT surgeon. After hospital discharge you will see your nurse practitioner every 4 months for the first year, then every 6 months after that in the ENT Tracheostomy Clinic. If you need to be seen more often, extra visits will be scheduled.
Respiratory therapists work with doctors and nurses in evaluating breathing disorders and give treatments. The respiratory therapist helps with breathing machines and tracheostomy tubes for people who cannot breathe normally on their own. Our respiratory therapists will teach you about tracheostomy care.
Pulmonologists (pronounced puhl/mo/nahl/oh/jists) are doctors who have specialty training in the treatment of lung and breathing problems. If your child needs a ventilator or breathing machine to breathe comfortably then he/she will be followed by our pediatric pulmonologist.
After hospital discharge you will see your pulmonologist every 4 to 6 months for follow-up in the pediatric ENT Airway clinic. This will be a joint visit with the pulmonologist, nurse practitioner, and/or ENT surgeon.
Speech-language pathologists, also known as speech therapists, have advanced training in speech and swallowing disorders and have completed a masters or doctoral degree. Children with tracheostomies are at risk for developmental delays, difficulty with communication, and difficulty feeding such as swallowing problems. The speech therapist will help you find local providers that can work on speech and feeding with your child.
The discharge planner is a registered nurse (RN) or social worker who will help to transition your child from the hospital to their home environment. You will meet with your discharge planner many times during your hospital stay. Discharge planners look at the needs of the patient and the family and help make a plan. They will also work with your insurance provider to get coverage for your medical supplies.
Otolaryngology (ENT) residents are doctors who have completed medical school and are undergoing additional training to specialize in surgery for the ear, nose, and throat. They help with the placement and management of tracheostomies. You may meet many different residents from the team while you are in the hospial. There is always an ENT doctor on call in the hospital, and available 24 hours a day, 7 days a week to assist with your child’s care.
A bedside registered nurse (RN) is a nurse that is involved with direct patient care. The bedside RN will help you with tracheostomy care while you are still learning.