Last week was Global Tracheostomy Tube Awareness Week. The mother of a child with complex health challenges started it. Her goals were to educate people and normalize her daughter’s trach.
While Trach Week focuses on the use of a trach as a long-term treatment, it got me thinking about my mom’s tracheostomy. She had a trach for three months while awaiting a lung transplant in the ICU. We were all nervous about my mom getting a trach, but it turned out to be a vital part of her recovery.
Considering how much buzz there is right now around the use of ventilators in relation to COVID-19, this seems like a good time to talk about our experience with trach and ventilator use in the hospital.
When she first arrived at the University of California, San Fransisco Medical Center, my mom was in bad shape. An acute exacerbation of her IPF had secured her a one-way ticket on a medevac flight to the ICU. Lying flat caused her oxygen saturation to plummet, so a ventilator was necessary to allow the doctors to run tests and scans. At first, she was intubated to stabilize her vitals enough to begin treatment and testing.
Doctors decided a trach would be the best option while she was in the ICU. Oral intubation is a short-term option to treat acute respiratory failure, but it is uncomfortable, traumatizing, and has many risks that a trach does not. A tracheostomy allows for precision treatment and monitoring without incapacitating the patient.
My mom’s need for a trach was one of the things that made me understand the severity of her condition. The trach would be a link from her failing lungs to the support of a ventilator. Unlike the supplemental oxygen that she had been using, you can’t exactly throw a ventilator in a backpack and cruise around town. It made it evident that my mom would be in the ICU for the long haul.
My mom called me before she went into the tracheostomy procedure. She was scared. If I had known then what I know now, I would have reassured her. I would have told her how much safer she would be with a direct, sealed passage from the ventilator to her lungs. I would have told her that her lung secretions could be removed with suction — which is horrible, don’t get me wrong — instead of painful, unproductive, and relentless coughing. I would have told her that the trach was a good thing.
Hanging up the phone after that call was one of the few moments in my mom’s IPF journey that I let the full weight of my fear engulf me. I sat in my car outside of my physical therapy office and had a good, long cry. A thought that I would rather not have had broke through the barrier of my mental self-defense. “What if those are the last words my mom says to me?” I remember exactly what they were.
Thankfully, they were not the last words she said to me. We communicated in other ways once I arrived in San Francisco the next day. She wrote on a whiteboard, and eventually, I learned to read her lips. I got good enough at it that I could even do it over video chat when I returned home for a month while we waited for lungs.
We video-chatted almost every day while I was in Washington. One day, I answered her call and she spoke to me! I swear, I almost exploded. I was shocked and confused, but so happy to hear her voice. Her lungs were doing well enough to tolerate using a Passy Muir Valve, also known as a speaking valve. This magic little device gave my mother her voice back.
The trach was key to my mom’s recovery. At best, it was a lifeline to oxygen, nitric oxide, and breathing treatments. It also was a barrier to bacteria and viruses.
At worst, it was a mute button and a tether. The trach itself was not problematic, but the lengths of tubing going from the trach to a cumbersome piece of machinery were, at times. Protecting the trach from being jostled or tugged by tubing was a constant activity for my mom. And for us, choreographing movements around the ventilator, tubing, and machinery in her ICU room was awkward and hazardous.
The worst part was that people weren’t always mindful of the fact that the tubes attached to a person’s airway. After one incident of pinched tubing — meaning loss of airflow — my mom learned to hold the tubing steady near her body when people were moving around.
Of course, being tied to a ventilator was a nuisance at times, but the benefits of the trach far outweighed the downsides. Trachs aren’t scary — they’re awesome.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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