“Living With My Trachea” Chapter 124

“You have a high amount of Co2 in your body and your body is not removing it properly. For you, the best way to get rid of it is to use a ventilator," the doctor explained to me. To much Co2 kill you. Like I don’t have enough to worry about!

I tried several different ventilator head harnesses, but I was not comfortable and each made me feel claustrophobic. I couldn’t sync my breathing to the rhythm of the ventilator. I tried this for about a month, but I didn't experience improvement. What I didn’t know at the time was that I still had pneumonia, which was making it even hard to breathe. Since I have Bular ALS, it was affecting my breathing as well. On the next visit to the doctor she recommended a Tracheotomy.

I was nervous and my mind was racing with thoughts 💭. My doctor reassured me that it would help me greatly with the Co2 and I wouldn’t continue to feel claustrophobic because there were no masks, just a big hole in your neck. You kids out there that think you’re cool with gages on your face. I got the ultimate gage suckas. When I woke up after the surgery I was completely ventilated. I was on low grade pain meds and normally would have been able to go home a few days later. Unfortunately, though, my friend pneumonia liked the VA hospital so much that we stayed for a fun-filled ten days. Since the trachea was placed, my Co2 levels have been back to normal. It’s a good thing too - I was beginning to go crazy.

One of my biggest struggles after getting the trachea was the strap needed to hold it in place. I’ve never liked anything tight around my neck. When my kids were growing up they knew to never grab or hold me there. The one time my daughter did she flew across the room like the guy from the tv show “The Greatest American Hero.”  I never understood autoerotaizum either. Who does that? 🤪 Anyway, let's get back on track. Not putting the strap on tight enough can cause Granulomas. A granuloma is a small, localized cluster of immune cells that form in response to inflammation, infection, or injury. They sting when rubbed, but can be kept under control with medicated drops. I got used to breathing with the trachea quite quickly, but two years down and I still fuss about the straps being too tight.

Speaking about breathing, it is in fact something I am quite fond of doing. When something interferes with the smooth flow of oxygen feeding my superhero body, I can get a little grumpy. There are some other issues to think about too.

 If I am not relaxed and try to breathe faster than the ventilator, I can’t. My ventilator is set for eleven breaths per minute and no more. As a result, I can’t have Laura walking around in her bikini anymore. I also meditate and when the instructor says inhale deeply and hold, it doesn’t work. My ventilator decides how deep and how long I can hold my breath. In order to get a deep breath to open my lungs fully I use the cough assist device.

I can no longer cough strong enough to expel junk out of my lungs anymore, and when a boogie does come up it has to be sucked out. The boogies cause a restriction and this has literally caused me to turn blue.🥶 Let me tell you, that’s NOT a good color on me.

I have written about the types of suction in previous posts so I won’t again, but I haven’t addressed the pain. The end of the cannula goes directly into my trachea about 1 - 2 inches from the “Y” branching into the lungs. My anatomy prevents the cannula from sitting straight up and down my airway. This means that if someone goes in too fast or does not pay attention with the suction hose… “OUCH”!😩😖 The feeling is similar to eating a chip when it goes down wrong, scraping the wall of your esophagus. Only in my case, this is my trachea and the pain can make a grown man cry. Any abrasion can cause bleeding that either needs to be sucked out or can drip into my lungs. Another pain in my neck - literally - is the power of the suction from the hose against the walls ripping something loose. Now doesn't that sound like fun?

Lastly... the daily cleaning. I have the flange, which sits on the outside of my stoma (fancy word for the hole in my neck) cleaned several times a day. This requires the gauze to be replaced and the area to be cleaned. Generally it’s quick and easy with little fluid on the gauze and neck. However when I am producing a lot of phlegm, it could be like a sick kid sneezing in their hand. I’m sure you can imagine what that looks like. Things can be even worse if there’s blood from the granuloma or suction injuries.

I hope this post answers some of your questions about tracheas. The reality is ALS sucks as much as the suction machine.

Love and Blessings 

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