After a child undergoes tracheostomy, many parents are eager to know what needs to happen in order to get the tracheostomy tube removed (decannulation). While the airway team is very eager to help you achieve this goal, we want to make sure this is done in a way that is safe and doesn’t risk having to replace the tracheostomy tube.
Addressing Trachestomy Needs
In order to safely decannulate the tracheostomy, all the reasons that a tracheostomy is needed must be addressed. These include:
Stable Lung Health
Generally, a child should not require a ventilator or oxygen to help them breathe.
Children recently weaned from oxygen or ventilators sometimes need this support if they get sick. Your doctor may recommend waiting for some time after being off this support to make sure they will do well without the tracheostomy tube.
Our airway team works closely with your lung doctor (pulmonologist) in order to determine when their lungs are healthy enough to proceed with decannulation.
An Airway Without Any Blockage
Your child’s airway must not have any areas of blockage that interfere with their breathing, making decannulation dangerous. This may include blockages in the throat (pharynx), voice box (larynx) or windpipes (trachea and bronchi).
Sometimes, additional surgery is required to remove any blockages that may make breathing without the tracheostomy more difficult. For example, some children need the tonsils and adenoids removed prior to decannulation to avoid sleep apnea.
Your child will undergo regular microlaryngoscopy/bronchoscopy (MLB) to examine their airway and to plan for any additional procedures necessary before decannulation.
Ability to Protect the Airway from Aspiration/Clear Secretions from the Lungs
One of the benefits to tracheostomy is the ability to suction secretions (mucus). These secretions may be aspirated (choked on) from above or they may be coming from their lungs.
Our airway team will closely work with your specialists to make sure your child has a safe feeding plan, is not at risk for lung infections due to aspiration and is strong enough to cough out secretions from their airway.
Multi-step Decannulation Process
If not already being used, your child will be fitted with a Passy-Muir valve (PMV, speaking valve) for daytime use for a period of time to see how your child tolerates breathing with this device.
This device is like a kazoo. Air travels in through the trach tube when your child breathes in. When they breathe out, a valve closes, and your child breathes out through their nose and mouth.
This is a way to see if your child can tolerate breathing air in one direction without the tracheostomy tube.
After regular PMV use, your airway surgeon and the tracheostomy nurse will help you begin daytime capping of the tracheostomy tube. The cap completely blocks the tracheostomy tube and allows the child to breath both in and out through the upper airway.
This is typically done after an MLB to make sure no granulation tissue (scar tissue) has formed in your child’s airway.
It can sometimes take some time for your child to have the strength to tolerate capping throughout the entire day. After all, he/she has been used to breathing in a different way. The tracheostomy resource nurse will help your family with a home daytime capping program that builds your child’s endurance with capping.
Sometimes, your surgeon may recommend placing a smaller trach in the airway (downsizing) prior to capping as this may help your child breathe more comfortably around the trach tube.
Once your child has tolerated capping all day for a period of time designated by your airway surgeon, your child will be admitted to the hospital for a capped sleep study. The purpose of this study is to see how your child breathes during sleep without a tracheostomy tube.
Breathing during sleep can be different because tissues are more relaxed. A capped sleep study helps our team make sure that there is no blockage of breathing during sleep (sleep apnea) that makes removal of the tracheostomy tube unsafe.
If your child’s sleep study is normal, the child will have the tracheostomy tube removed during the sleep study admission.
In rare cases, sleep study may not be obtained during the same admission as decannulation, even if it is normal.
If your child’s sleep study is abnormal, your airway surgeon will discuss “next steps” with you.
After removal, a small dressing will be used to cover your child’s tracheostomy stoma.
After decannulation, your child will be observed in a monitored setting for 48 hours. This is to ensure the child continues to breathe well without the tracheostomy tube. If your child’s breathing is stable throughout this period, they will go home without a trach.
The tracheostomy resource nurse will work with any home nursing you have to discuss continued timing of care.
Approximately 4-6 weeks after decannulation, your child will follow up with their airway surgeon. Sometimes the tracheostomy stoma site closes by itself. Other times, an additional surgery is needed to close the stoma. Your surgeon will discuss the plans and timing of any additional procedures with you. While the stoma is still open and healing, it is still important to observe any precautions that you observed before decannulation.
After decannulation, nursing coverage that had previously been available to families may no longer be offered. There are other reasons that a child may be eligible for home nursing care, but if the tracheostomy tube is the only reason for nursing care, then that care expires within weeks of decannulation. Families should be aware of this and should be prepared for this eventuality. There is opportunity for families to learn more about their eligibility for home nursing and other healthcare benefits by contacting their Division of Specialized Care for Children representative, social worker and their insurance provider for information.