Why are tracheostomy tubes—or trachs—so often misunderstood and feared?
A group of mothers of children with trach tubes set out to answer that question four years ago when they launched Global Tracheostomy Tube Awareness Week (May 17 to May 23, 2015). This advocacy week focuses on spreading awareness of tracheostomy patients and their families by sharing personal stories, photographs, videos, and educational facts and information with the public.
Personal stories and photographs can go a long way with changing this negative perception. Read Maria, Andrew, and Madelyn’s stories below to find out what they (or their parents) are doing to teach others about living with a trach.
One thing that didn’t stop after high school is the frequent questions, comments, jokes, and sometimes, even stares, Maria receives from her peers about her tracheostomy and ventilator. Instead of feeling self conscious, Maria decided to start educating her peers on social media.
Maria posted several videos of her trach and g-tube changes to answer some of the noise swirling around her social circle. The videos are met with a disclaimer, “If you have a weak stomach, don’t watch!” Videos of Maria changing her g-tube (including images of stomach contents) prove that she has real guts—literally.
Facebook friends ask in the comments “What does it do (referring to a tracheostomy)?”
Maria’s response: “A clean opening to breathe. I’ve had it for seven years and probably will have it for life. I can’t complain—it’s keeping me alive.”
Maria finally has a platform to answer some of the most pressing questions. She is refreshingly open and helps everyone feel more at ease.
Her fresh attitude and confidence give Maria the motivation to keep going. She’s not afraid of what other people think of her—and stops at nothing to follow her dreams.
To read Maria’s complete story, click here.
Andrew is a fast learner—with everything. He wasn’t any different when he went to wean off the ventilator and ultimately, with his successful decannulation (removal of the tracheostomy tube).
Jennifer, Andrew’s mom, recalls when she first learned that Andrew would require a tracheostomy, “I thought a trach meant that Andrew wouldn’t be able to move and would lay in bed all day.” She continues, “Once Andrew was trached, he started smiling immediately. He was so happy.”
“If I ever had to do it again, I’d trach him much earlier,” Jennifer reveals.
Andrew’s stoma will most likely close on its own. Since decannulation, Andrew’s nurses keep the site clean and bandaged.
“He still breathes out of it,” says Jennifer. “But it’s closed a lot already.”
To read Andrew’s complete story, click here.
Madelyn’s parents were proud of her progress in the hospital. Madelyn spent the first two months of her life intubated. She was eventually extubated and transferred to a CPAP machine. Eventually, she graduated to a high-flow nasal cannula and was even eating by mouth! Last July, Madelyn had her first major setback.
Madelyn aspirated and was immediately intubated. After a few weeks, she was extubated and then re-intubated again. Madelyn’s team did some tests and found that she suffered from bronchomalacia, a term for a “floppy” part of the bronchus and/or trachea, and required a tracheostomy tube.
“Even though we were against traching our daughter, we chose to go ahead with it,” Amy explains.
Minutes after Madelyn’s trachestomy tube was placed, Amy and Jeff entered her room and found their daughter bright-eyed and smiling ear to ear.
Looking back on it now, Amy realizes that Madelyn’s trach was actually a good thing for her daughter.
“I never would have believed it before, but I saw Madelyn transform into a healthier baby after the trach,” Amy says.
Madelyn’s body no longer needed to focus all of its energy on breathing, and because of that, she gained almost six pounds in the first month after placement of her tracheostomy tube.
To read Madelyn’s complete story, click here.
What is your experience with trachs? Tell us here!