Session Twelve: Uncharted

Travels with Our Trachie

Session Twelve: Uncharted

It was summer again and our little trachie loved that her big sister, who had just finished kindergarten, was now home every day. Her sisters were incredible motivation for our girl in achieving all the milestones her doctors had believed were unlikely. Now that she had much better head control and could sit independently, our girl was becoming more active. Of course, with her being ventilator-dependent, this presented some logistical challenges. Someone had to chase after her with the ventilator while she scooted around in her cozy coupe car.

We ventured back to the beach that summer for our family vacation. Again, she loved the pool, but was still leery around the ocean and absolutely hated sand. Honestly, it was for the best that she didn’t want anything to do with sand seeing as that stuff gets absolutely everywhere. It would be really dangerous to get sand near her stoma, seeing as the hole in her neck that holds the trach goes directly to her lungs. (The same reason we exercise such caution around water.)

Many great memories were made during the summer of 2018, but a major surgery at the end of the summer loomed at the back of my mind during those months. One of the birth defects associated with her rare form of dwarfism is micrognathia (an undersized lower jaw). Our girl would be undergoing a very invasive mandibular distraction surgery to correct her jaw.

In our attempts to keep her from contracting any viral infections, we isolated her from public outings during the weeks leading up to surgery. Though we felt bad for leaving her behind, we still took the older girls on excursions to the zoo and Ohio Caverns. Our trach life had resulted in our children having to miss out on some opportunities, especially those first two years after she was born. We realized their young lives had been drastically altered, so we had been making efforts to carve out some time for just them, without our trachie.

Navigating our new life was a transition for all of us and as parents we wanted to make sure our other children didn’t develop resentment toward their sister or our unique family life. We had teenage sons and toddler daughters, all of whom adjusted in their own ways. Years later, we are still navigating through these uncharted waters with some occasional storms along the way.

Still, one of the biggest storms we ever weathered occurred at the end of that summer. During the surgery, our daughter’s jaw was broken in two places, and metal distractors were placed in the lower jaw with distractor arms protruding from her skin just below her ears. Twice a day, we had to attach a screwdriver to the hardware and turn the arms to slowly pull the jaw apart. For two weeks, we endured the heart wrenching pain of watching our daughter’s swollen face grimace with each crank of the distractor arms. Those were the most difficult 1.8 centimeters that we have ever traveled with our trachie.

The result of the surgery and three-month recovery was much needed space created at the back of her throat, which aided her in achieving oral feeds, and lowered ventilator settings. The surgery was deemed a success, though we were hoping it would be the catalyst to our daughter being weaned from the ventilator. That was not to be our journey and four years later, our girl is still at those same ventilator settings. Truly, some days it feels like we have to take our life one centimeter at a time, but through the grace of God, we have found immense joy as we travel through the uncharted world with our trachie.