Our daughter June had a tracheotomy in December 2013 when she was 2 months old. As expected, we as parents have gained a ton of medical knowledge and hands-on experience over the past year. We love to share what we’ve learned with our family, friends, and anyone who is interested in learning more. We’ve assembled some basic information below as a quick overview. I’m planning additional posts on specific medical and trach-related topics in the future. If there is anything you’d like to know more about, or a future post you’d like to see, feel free to leave a comment below, which is publicly viewable, or to use the contact form on the top menu, which will send a message to me privately.
What is a tracheotomy? How is it different than a tracheostomy?
A tracheotomy is the name for surgery done on the trachea (the windpipe). A tracheostomy is a hole (stoma) created in the neck and trachea as an artificial airway. So, June had the tracheotomy surgery to make the tracheostomy to breathe through. You have likely seen Hollywood’s version of an emergency tracheotomy portrayed on TV at some point, when a quick thinking hero kneels beside an unconscious stranger who is not breathing and bellows, “I need a knife and a ball point pen!”
What is a trach?
Trach (pronounced trāk, rhymes with drake) is a shortened version of tracheostomy. It can be used to refer to the tracheostomy, as in,
“My daughter has had a trach for a year.”
Or it can refer to the tracheostomy tube, as in,
“My daughter pulled her trach out.”
(It totally happens and it’s a big emergency.)
Why might someone need a tracheostomy?
A tracheostomy is done to create an artificial airway. The most common reasons that this may be needed are:
- the existing airway is damaged or unuseable due to trauma, infection, swelling, or structural defect such as tracheomalacia
- the patient needs long-term mechanical help to breathe, such as from a ventilator or CPAP machine, and the trach will protect the existing airway from the dangers of inserting a breathing tube repeatedly by mouth (“oral intubation”) and of keeping one placed for an extended period of time
For a complete and technical list of reasons, see here.
June needed a trach due to a combination of these reasons. She was born with a fast heart rate (tachycardia) which needed to be controlled by medication. Finding the right medication proved to be difficult; during the course of med trials, June needed to be intubated and on ventilator in the ICU. On several occasions the doctors removed the breathing tube and allowed June to try to breathe on her own (an “extubation trial”) but irritation, swelling, and eventually infection in her throat from the breathing tube prevented her from breathing adequately on her own. The infection caused permanent damage of the upper trachea, so the trach was placed below the damage so that June can breathe that way until she and her trachea have grown enough to have a reconstructive surgery of her airway.
Is a tracheostomy permanent?
This depends on the reason the trach was placed and on the health of the patient. Some people have a trach for only a matter of months, especially in the case of adults who need it only for mechanical ventilation while recovering from injury or illness. Some people need it for life if the reason they got the trach cannot be repaired. Some people also choose to keep the trach rather than risk surgical repair. In June’s case, we will try reconstruction as soon as her doctors deem her big enough and healthy enough to undergo the surgery with the best chance for success. Doctors generally do the surgery only in the spring and summer months so that the patient is not exposed to cold, flu, and respiratory syncytial virus (RSV) while they are recovering. We hope to be approved for surgery in spring 2015. I’m planning a future post with more information on this and other trach-related surgeries.
Can people who have a trach eat?
The trach itself doesn’t prevent eating because it is located in the trachea (windpipe which connects to the lungs) only. The esophagus which connects to the stomach is located behind the trachea, and it is unaffected by the tracheotomy surgery. However, the underlying reason that the trach was needed, such as trauma, prematurity, or muscle tone problems, might also cause feeding difficulty. For this reason, it is not uncommon for children with a trach to also need a feeding tube at some point. June used a feeding tube until she was 3 months old, and since then she has eaten by mouth.
Can people who have a trach talk or make sounds?
Sometimes. I touched on this when I wrote about cussing in sign language. To recap, the trach is placed below the vocal cords, so air needs to get around the trach in order to make a sound (vocalize). Two things must occur for this to happen:
- There must be a little free space between the trach tube and the trachea walls, called “a leak” that will allow air to go around the trach tube
- Unusually, the opening of the trach must be covered upon exhale, such as by a finger or by a one-way speaking valve like the Passy-Muir, so that the air will go upwards past the vocal cords and out of the mouth rather than out the path of least resistance, the trach tube. Sometimes people have a large enough “leak” that they can vocalize without covering the trach opening, and this is called “talking around the trach”
June cannot make sounds right now, with or without a speaking valve, as there is scar tissue preventing air from getting above the trach to the vocal cords.
What is involved in caring for a child with a trach?
For a little bit about our experience, see the posts A Day in the Life and A Rough Day in the Life. However, note that as far as trachs go, June’s case is pretty simple since she does not use a ventilator, CPAP, oxygen or nebulized meds regularly. Some children with trachs need these supports daily. Also, the overall care that a child with a trach needs will vary widely depending on their additional special medical needs, like a feeding tube, and on the underlying condition(s) which led to the need for the trach.
Watch for more trach-related posts soon! Also, if you are interested in more detailed information, visit the links page on the top menu bar for great tracheostomy resources.