There Will Be Blood (and a Little Romance)

Two nurses and a doctor surround me where I lay in the hospital. I feel like a human sacrifice, a thought that makes me giggle. After all, there will be blood. Quite a lot of it.

Evan, who always stays in the room for these events to “make sure they’re doing it right” and to give me a focal point, sees the slight shake of my shoulders and steps forward, concern etched on his face. He knows I laugh and smile when I’m anxious. He can’t reach me, though.

It’s starting.

“Alright,” the doctor says, “I hear you’re a tricky change, so we’ll try to make this fast. Hopefully we’ll get it in the first time.”

I’m not interested in what he’s saying, though. I’ve heard it from six other doctors. What I’m concerned with is my pain medicine – two Norco – wearing off as my fear mounts. Over two years of this, and I’m still terrified every time.

Thankfully, I remember what I am supposed to do when I’m this scared. I look for Evan and find he’s already looking at me.

“OK, we’re going to disconnect the ventilator, take out the old trach, and put the new one in, hopefully in about a minute,” the doctor says.

My heart rate ticks up to about 140 by my estimate because I know exactly what this is going to feel like. I’m going to slowly suffocate without my ventilator. A minute is a long time to go without air. Then if I’m lucky there will be only two sharp shards of pain, one when they rip out my trach – the breathing tube in my throat – and one when they shove the new trach in, and that’s IF this doctor gets the new trach in the first time. They never get it right, though, because I’m between sizes.

Evan, Evan, Evan. Focus on those blue eyes. Nothing else matters.

“We’re taking off the ventilator in 1, 2…”

Evan holds my gaze with his as they take away my air and pull out the old trach.

“It’s a tight squeeze, that’s for sure,” the doctor says as he attempts to push the new trach in.

My toes curl. I’m really feeling the lack of oxygen. The pain overwhelms the Norco. Evan doesn’t look away. I stare into his eyes even as I feel the doctor rip out the new trach.

“It’s a sharp down angle. Again,” the doctor says. Time is not on his side.

I swallow blood. Clots will come out through my feeding tube later. One more powerful pop of pain, and the doctor says, “There we go! It’s in. And here’s the ventilator.” Delicious air rushes into my aching lungs. “All done. You did great,” he tells me.

I finally look away from Evan up at the doctor. He looks tired, like that minute lasted forever. I want to tell him I know how he feels, but I can’t speak without my tobii (eye gaze computer).

As if reading my mind, Evan grabs the tobii and hurries towards me. Then he pauses and says, “Is that her old trach?” I follow his wide-eyed stare and suddenly feel a weight on my chest. A bloody plastic tube with ridges lays on me. My stomach rolls. In the frenzy of the trach change procedure, the doctor must have laid it down and forgotten about it. One of the nurses snatches it up.

“Oops!  Sorry about that. So I will see you in two months for your next trach change.” I relax a little. This doctor was clueless about me at first, but he adapted. Maybe next time he’ll remember the peculiar anatomy of my cut.

“When is that, June? Actually, I’m on vacation for most of that month, so you’ll be seeing Dr. Roberts. He’s great, you’ll love him.”

Another different doctor. Suddenly, I can’t catch my breath. I start to cough up blood, and my ventilator tube turns ruby red. A nurse jogs over to suction my lungs. Evan pushes through to coach my breathing, hoisting the tobii under one arm so he can hold my hand.

“Slow down,” he says, his voice steady and calm.

The nurse says, “Don’t be afraid. This is normal.”

It’s not the blood that’s scaring me, though. It’s the vision of trach changes every two months for the rest of my very unnatural life.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/

NOTE: If donating through PayPal is more convenient for you, you can still contribute that way. Just be aware your gift won’t be tax-deductible. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

3 thoughts on “There Will Be Blood (and a Little Romance)

  1. Hannah says:

    Rachel, you are so determined and brave to keep writing. My heart ached reading this, as I could imagine and relate to that terrifying helpless feeling. Yours is a brave fight, and so many people must be so proud of you, Evan especially. Love and hugs.

    Like

  2. Josie says:

    Omgggg! Reading this alone gave me the heeby jeebies! That sounds tough, changing your trachea. I can’t imagine the mental strength you’ve gained through all of this. A cure would indeed be a miraculous miracle. I am sooo rooting for you Rachel & Evan. I’ve been reading about cognitive neuroscience lately and we are closer than ever to understanding enough to have an actual cure for ALS. Alzheimers too. How amazing that would be. We can pray. Stay strong my friends. Sending my love, while yours continues to inspire me.

    -Josie Hamilton💫💖🙌💖

    Like

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