LIVING WITH A TRACHEOSTOMY

Living with a Tracheostomy - Introduction 3 Toni’s Story Amy’s Story The Peichel Family’s Story Tracheostomy & Suctioning 12 Frequently Asked Questions Procedure for Suctioning a Tracheostomy Tube - Clean Technique 18 Support Groups & Additional Information 22 References & Useful Links 23

Introduction If you or someone you love has a tracheostomy, you may feel a bit overwhelmed. You probably have lots of questions about what it means to live with a tracheostomy. Having a tracheostomy doesn’t mean sitting on the sidelines. With the proper equipment and a little instruction, a person with a tracheostomy can live a full, happy, and active life. This brochure features three stories about people who have learned how to live with a tracheostomy, whether their own or a loved one’s. Each story is unique from the perspective of the reason for the tracheostomy and the strategies used to...

The social butterfly - Toni never considered her tracheostomy as an obstacle and searched bravely for herself and others for the best solution to have a more mobile life. Nothing was an obstacle for Toni. When faced with the challenges of becoming tracheostomy and ventilator dependent, it didn’t upset her. Toni achieved the seemingly impossible; defying doctors’ prognosis, she was a true inspiration. As the winner of many charitable awards for bravery and achievement, Toni taught others about courage, strength and bravery. She met with countless celebrities, members of royalty and parliamentary...

that came in a small bag which seemed to tick every box. Toni always wanted to make things better for everyone, especially infants and babies, so she shared her excitement and recommended the device to others. According to various studies, the number of children under the age of two with a tracheostomy is rising 1, largely due to the fact that a greater number of critically ill infants requiring chronic ventilation survive. This group relies heavily on a home care pump capable of achieving low level vacuum suctioning. When nasotracheal suctioning guidelines for neonates, children and young people...

Despite the challenges, Amy lives a full life. “Stay active and busy. This does wonders to improve your self-confidence and keep your mind off of your problems.” She played marimba in her high school band, was valedictorian of her class, and is a vegetarian. Amy Phillips also has a tracheostomy, but she clearly hasn’t let that slow her down. “My airway problems will always be a part of my life, but I don’t want them to limit me. I would much rather be involved in things and deal with my trach problem when I need to.” Amy first got a tracheostomy due to a complication from her premature birth....

At 17, Amy had 2 laryngotracheal reconstruction surgeries. As part of the process, Amy had to return to the trach she hadn’t had since she was 3 years old. Amy admits that being a teenager is hard enough without adding a trach to the picture. “For the first year I wore a scarf or a turtleneck everyday to keep people from staring at my neck. After a while, I got tired of it and left my trach in plain sight. Learning to deal with people’s reactions and your own self-consciousness is a necessary step toward developing a healthy attitude about your trach. Now, I am more worried about what my hair...

Amy’s busy lifestyle illustrates that having a trach doesn’t mean you have to stay home. Even travel is possible if you are properly prepared. “People who have a trach because they have a nervous or muscular disorder might not have a strong cough and will 8 probably need a portable suction machine. I find that during the day I am okay with just a few vials of saline, but when I travel I always take my suction machine.” Coping with one’s feelings about having a trach can be as challenging as the physical hurdles. Amy has found that reaching out to others and staying involved in life were important...

The Peichel Family’s Story The focus of their daily lives changed from Colin’s tracheostomy to Colin, the boy they loved. Having a child with a tracheostomy is a life-changing experience – just ask Cory and Bobbie Peichel. Their son Colin breathed through a tracheostomy tube for almost four years. The almost constant care a trached child needs can be overwhelming, but Cory and Bobbie want you to know that there is a light at the end of the tunnel. Colin Peichel was born with Down syndrome and resulting heart defects. When he was four months old, doctors performing open heart surgery discovered...

At first Cory and Bobbie both slept in the same room with Colin. But because of Colin’s need to be frequently suctioned, a full night’s rest was impossible. They found the best arrangement was to take turns caring for Colin at night. 10 Spending so much time caring for the needs of a trached child can stress a marital relationship. “I think it takes effort to stay connected as a couple under ‘normal’ circumstances with small kids. With Colin it was even more of a challenge. I think being able to laugh helps… laughing together. It releases stress and can diffuse a tense moment,” advises Bobbie....

Ryan, their firstborn son, was also a priority. It can be easy for the siblings of special needs children to get lost in the shuffle of daily care. “We had to be mindful that he needed our time and attention. When I had errands to run or work to do in the garage, Ryan was always with me. Most important was time spent together.” 11 Feeling like a spectacle when you go out in public for the first time after your child has been trached is common. Strangers often ask questions. Suctioning your child in public can cause feelings of, as Cory describes, “living in a fish bowl,” but it’s unavoidable....

Frequently Asked Questions (FAQ’s) Why is suctioning of a tracheostomy tube needed? Having a tracheostomy tube predisposes a person to an increased production of mucus and a decreased ability to rid themselves of that mucus. Suctioning promotes proper air flow by removing excess mucus that can block air from getting through the tracheostomy tube. How often is suctioning needed? This depends on the individual and their physical condition. For example, children who have had their trach since they were very young may have difficulty learning to cough and may need to be suctioned more often. Another...