Introduction: Trach Life and Its Challenges
What is a Tracheostomy?
A tracheostomy, often referred to simply as a "trach," is a medical procedure that involves creating an opening through the neck into the trachea, or windpipe. This opening provides an alternative airway for breathing, bypassing obstructions or issues in the upper airway. It's a life-saving procedure for individuals with severe chronic lung diseases, traumatic injuries, or congenital abnormalities affecting their ability to breathe. In our case, Hannah spent months on the ventilator while in the Neonatal Intensive Care Unit (NICU), while failing multiple extubations (pulling her off the vent). The prolonged intubation, along with repeated intubations scarred her upper airway, leading to subglottic stenosis (narrowing of the airway) as well as tracheomalacia (floppiness and collapse of the airway).
Trach life involves not just the medical aspect but also adapting to the emotional and social impacts. Learning to live with a trach requires patients and their families to become proficient in the care and maintenance of the tracheostomy, which includes regular cleaning and managing the equipment associated with it. Caregivers must also be well versed in emergency airway management, as this artificial airway is the only thing that allows them to breathe. It's a profound adjustment, but one that can offer a renewed sense of hope and independence.
The Daily Realities: Living with a Trach
For those living with a tracheostomy, every day involves a set of routines that are critical for health and well-being. Managing a trach means staying vigilant about the cleanliness and functionality of the trach tube, as well as being aware of the surrounding environment to minimize the risk of infections or aspiration. It also involves learning to communicate in new ways, as speaking can be a challenge depending on the type and placement of the trach. Speaking valves are available for trachs, however, depending on the severity of stenosis, individuals may not be able to use the valve, even for a short time. Hannah has used sign language since she was a baby and attended a school for the deaf so she could be immersed in sign.
However, trach life isn't just about the medical care. It's also about adapting to the social and psychological aspects of having a visible medical device. Individuals with a trach may face staring or questions from the public, which can be uncomfortable or invasive. Despite these challenges, many individuals find strength in their situation, developing resilience and a sense of community with others who share similar experiences.
Daily routines for a trach, for us, includes cleaning the stoma area twice per day with soap and water. We also assess the stoma, looking for signs of irritation or breakdown. An outing requires that we have her emergency equipment available at all times: extra same size trach and one smaller, suction and supplies, extra humid moisture exchangers (HMEs, these fit over the trach and filter the air, much like our noses do), stethoscope, portable/fingertip oximeter, ambu bag (yes, we’ve used the ambu on too many occasions), and other necessary supplies.
Personal Experiences: Stories of Triumph
Everyday Heroes: Celebrating the Trach Warriors
Trach warriors are individuals who embody the essence of courage and determination. These are the everyday heroes who navigate the complexities of trach life with a positive spirit. Celebrating their stories is not only about recognition but also about inspiring others who might be at the beginning of their journey.
From young children who learn to play and interact with their peers while managing their trach, to adults who continue to pursue their careers and passions, these individuals redefine what it means to live a full life despite medical challenges. They often become advocates, educating others about what life with a trach is like and how to interact with someone who has a tracheostomy. In sharing their experiences, they build a supportive network that affirms no one has to face these challenges alone.
For Hannah, she struggles with extreme temperatures. Illness for her is rough as she often needs supplemental oxygen and misses days to weeks of school. These are just 2 reasons why we started Stollen Moments. She is also a budding photographer and loves to capture precious moments by photos.
Overcoming Obstacles: Tales of Resilience
The journey with a tracheostomy is punctuated by numerous obstacles, but it's the stories of overcoming these challenges that resonate with hope and resilience. Tales of resilience in the trach community are not just about surviving; they're about thriving in the face of adversity.
One powerful example is the transition back to daily activities post-surgery. Learning to eat, speak, and engage in physical activity with a trach requires not only time and patience but also a strong support system. Another common hurdle is the initial fear and uncertainty that comes with understanding and accepting the trach.
Many of Hannah’s recoveries resulted in a stent being placed in her upper airway to keep it open while healing. These stents have always led to aspiration and a rough surgical recovery. Several times she has come home with a nasogastric (NG) feeding tube so we can maintain hydration and nutrition.
Despite these hurdles, many trach patients emerge with a deeper appreciation for life. They often report a renewed sense of purpose and an eagerness to give back to the community that supported them. Their stories inspire new patients and their families to look beyond the trach, to the possibilities and joys of everyday life.
Understanding Subglottic Stenosis and Tracheomalacia
Subglottic stenosis and tracheomalacia are two conditions that often necessitate a tracheostomy. Subglottic stenosis is a narrowing of the airway just below the vocal cords, which can lead to significant breathing difficulties. It may be congenital or acquired, caused by prolonged intubation or other trauma to the airway.
Tracheomalacia is characterized by a weakness and floppiness of the walls of the trachea, leading to the collapse of the airway and making it difficult to breathe, especially when coughing or during respiratory infections. This condition can also be present at birth or develop later in life.
Both conditions can dramatically affect one's quality of life, but with proper diagnosis and management, including the use of a trach when indicated, individuals can lead active and fulfilling lives. Understanding these conditions helps to demystify the reasons behind tracheostomies and fosters a more informed and empathetic community.
Stay tuned for part 2 of this series where we will discuss fostering hope in this patient population.