Seven-Year Break

Most weeks are repeats from previous ones. However, others can result in major changes that were unexpected. This past week was one that ended up being very unexpected, and sometimes scary.

On Sunday, November 27, mom suctioned as I felt junk in my lungs. She noticed my trach button was sunk in more than normal and it was hard to remove the closure plug. When the button was changed in October, I did see it didn't stick out as far as my previous button. That night, I had my nurse setup a mirror for me to see, and it was indeed very sunk in. On Monday, I messaged my doctor and saw it had gone further in over night.

Tuesday, November 29

This was a new experience for me and not one I had heard about before. Given how quickly the button was submerging in my throat, I expected it to slip all the way down and block my airway. Sitting up, it wasn't as covered by my neck, so I increased my time upright and laid flat for shorter periods. While down, I tried to minimize movement and just watch videos. My night nurse talked about different tools he had to try to extract it if needed, but I wasn't sure. Trying not to take deep breaths, I still envisioned not being able to breathe at any time. I continued to pray and trust God's plan through it all.

My ENT finally returned my call Tuesday afternoon and I got scheduled to see him Thursday morning. For two more days, my caregivers and I played a game of moving my skin, minimizing activity and flat time, and praying I could keep breathing.

The appointment came on a cold December 1st. With the button nearly submerged in my neck, I wasn't sure how the doctor would remove it. After numbing the area, he got the closure plug out by hand and used a clamp to pry the button's outer part from my throat. With the button free from my stoma, the ENT put in my backup trach set I prepared the day before.

I had seven years and just over one month without using a trach. It was something I never expected to achieve and am thankful for the time I had. Since the switch, my body has been adjusting with my oxygen and heart rate bouncing around like a yo-yo, especially at night. I have had little energy and a fair amount of pain.

Thankfully, everything was starting to stabilize by Saturday afternoon, but I'm still doing minimal activity while flat. I had a trach full-time for over thirty years, but I'm adjusting to feeling it in my throat again and how to clear my lungs to reduce suctioning. I am hoping to return to the button again in spring, but I know the quad life can change quickly. This coming week will hopefully be calmer, but I trust in God's plan, whatever may come.