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Celebrating Global Tracheostomy Awareness Week

Celebrating Global Tracheostomy Awareness Week

Our trach journey began in January of 2011, when our fourth child, Chance, was born.

We knew there would be some complications.

My 20-week ultrasound revealed that his lower jaw was extremely small, and it was determined that he most likely had Oto Palatal Digital Syndrome; a rare genetic condition that runs in our family.

My daughter and I are both affected as well.

Within hours of his birth, it was determined that he would need a trach.

His lower jaw was positioned so far back that his tongue kept flopping back, blocking his airway.

Surgery was not an option yet as his jaw needed time to grow.

We weren’t novices at having a special needs child.

My daughter has a feeding tube and was diagnosed with autism before the age of three.

The trach, however, was a whole new ballgame and a very scary prospect.

Within a few days, however, the trach became the least of our problems.

After a four-month stay in the Neo-Natal Intensive Care Unit (NICU) involving acute respiratory failure, a staph infection in his lungs that required several weeks of IV antibiotics, and too many feeding issues to count, he came home with a feeding tube and what seemed like a ton of medical equipment.

Our living room resembled a small hospital room.

Along with the feeding pump and feeding tube supplies, we had a humidifier, a pulse oximeter, a suction machine, a nebulizer that was adapted for his trach, an IPV machine that kept mucus plugs from building in the lower lobes of his lungs, and endless boxes of trach supplies.

It was a little overwhelming.

The humidifier was extremely loud, and the pulse oximeter came loose when he wiggled and set off the alarm, which caused more mini heart attacks than I’d like to remember.

Going anywhere with him was a challenge.

Going anywhere with small children can prove difficult but going anywhere with a baby who has a trach is a major ordeal.

Aside from all the medical equipment and emergency bag that must go everywhere he goes, there had to be two adults in the car with him when we went anywhere; one to drive and one to suction as needed.

For the first year or so of his life, the only time we took him anywhere was to doctors’ appointments.

Illness has always been a nerve-racking issue. We have three older kids, all in school, who seem to bring home every virus that comes around.

In his first four years, he was hospitalized no less than five times for respiratory ailments.

We have been very lucky these last few years, but it is still very scary and stressful when he does become sick, as he can go from bad to worse in no time.

Having a child who is medically fragile can be isolating. Not only do we have to be careful when we go out, but in our case, there are very few people that we can relate to.

There aren’t that many kids with trachs locally, but I have found several kindred spirits through the internet.

These are people who deal with the same issues that we face every day, who know what I’m talking about when I ask about granulomas in the stoma or who feel my pain when I freak out because Chance has started yanking on his trach when he gets upset.

They may not know it, but they have been a port in the storm on many occasions.

The last seven years have had a profound effect on everyone in the family.

As chaotic and stressful as life can get, we are constantly reminded that we have so much to be thankful for and we have learned not to sweat the small stuff.

Chance has come a long way.

He is able to wear a cap on his trach during the day and just has a humidifier on his trach at night.

He has had two surgeries on his jaw which have improved his speech and most of all his eating- we were able to remove the feeding tube in 2013 and now he eats more than his two older brothers combined.

Having a child with a trach has been one of the hardest, most humbling journeys we have ever been on, but I would not trade one minute of it.

For more information on Global Tracheostomy Awareness Week and the Global Tracheostomy Collaborative, please visit here.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jennifer Arnold

Meet Our Blogger

Jennifer Arnold is a freelance writer from Northern California and the mom of four children. She has a passion for educating others about autism, rare diseases, and the everyday life of a special needs parent.

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