One Month Trachaversary 2/27/21

Mar 1, 20213 min read

Can you believe its been a month already? I can't, it's insane to think about!

The tracheostomy itself is pretty much everything I anticipated it to be. From the inner cannula changes to the cleaning of the stoma, suctioning of secretions, etc. there really wasn't anything too out of the ordinary. Just trialing of different products or how I might wear or do certain things.

Trial and error of things like clothing and what's most comfortable. Tubing and the best ways to sleep or have it placed when awake, etc.

I have found I prefer v-nevk or crew neck shirts the most but obviously still wear t-shirts. Due to drainage and just overall comfort. Hoodies are always my go to, if you know me, you'd always find me in one year round. Sadly they too aren't too comfy now. I'm finding the quarter zip or full zip options are the way to go. It really is just a matter of finding what works or what most comfortable now that the tracheostomy is in place.

There are instances and bumps in the road, even scary ones. They aren't 100% tracheostomy related but they go with the territory of having one. Its the process of living with a trach and respiratory failure and the best approaches to this life. It can get messy and super challenging at times!!

Due to Ehlers-Danlos Syndrome healing took a little longer. Actually there's still some redness and soreness. Overall though the healing itself was quite easy.

Compared to the various other surgeries I've had this was fairly low on the list.

I wish I had advocated a bit more heavily on why I was needing a tracheostomy. I wish I had made it known I was absolutely going to need to wake up from surgery on a ventilator. Waking up unable to breathe was the most horrifying experience!

Because I'm young it was assumed that I would be fine on just oxygen a lone. I really should have voiced what I needed coming out of surgery. It was noted that it may be needed but not a must. Because I was stable on oxygen I was not placed on a vent. I am a rare unicorn, I am on mechanical ventilation, but I am not on oxygen too, which apparently is a very rare thing.

Overall life with a trach isn't all too bad. Since getting the powerchair I've gone out once, I've gotten a couple curious looks. I need to make a shirt that says "this isn't due to Covid" or something.... I know people assume it! I swear my lungs sure picked the year to fail. I didn't need some crazy virus, I just needed my own self.

Super thankful I got the tracheostomy and a new lease on life. My energy has returned and learning how to adjust and adapt to this new way of living. Figuring out how to make the changes work for me and not against me.

I forget my body does still get easily tired thanks to fatigue and I can't push myself but so much or I'll be paying for it for a couple days. I'm trying to find my balance again.

I'm so so grateful for all the people and support in our life. Seriously you have no idea how much you all mean to us, to me. Thank you so so much!! 💜🤟🏼🌈🦄🥰🤗