Tuesday, February 9, 2016

S words ...

Stoma. Secretions. Suction. Sutures. Saline. Sterile. Supplies. These are the words that colored my world while I was in the hospital from the tracheostomy ... words that I couldn't say. The size of the trach they put in, which was the standard size tube, was too big for the size of my trachea which made it so I couldn't speak. Unable to push air up past the trach and over my vocal cords forced me to be locked in my mind for 5 days. Do you know how much you have to say when you suddenly aren't able to say anything?! Thank goodness for the Notes app on my phone ... and for the invention of texting. You don't realize how dependent you are on your ability to speak until you truly can't. My phone would ring from various offices of Stanford calling to schedule appointments and all I could do was look helplessly as it went to voicemail. Cam lost interest in watching me wave and blow kisses at him on FaceTime pretty quick. I had lots of one-way conversations with my mom and just watched as she handled Nicholas ... unable to tell her the phone is sideways and I'm really just looking at half of her and half of the ceiling and that I can't even see the baby. Mike or one of the nurses had to call and order my meals for me 3 times a day after I pointed to what I wanted on the menu. And I am now ever so grateful for the ability to speak.

The hole they put in my throat is called a stoma - and it matures very much like the hole of an ear piercing. It keeps itself open for a certain amount of time. Secretions are what come out of the stoma and what you find underneath the trach plate and have to clean pretty regularly. The trach plate is sutured down onto your throat in four places to keep it steady while the stoma matures. Suctioning is what you have to do at least three times day to remove any secretions that make their way into the inner cannula of the trach so you don't get a mucus plug and potentially suffocate (another S word). Saline is what you use to clean and suction and you have to try your hardest to keep the whole process sterile. And this why my bathroom is now overflowing with a suction machine, suction catheters and a whole host of other medical supplies.

On day 6 at 6:30 am, my wonderful resident ENT doc was making his rounds and came in to downsize my trach. The process was painless but causes coughing purely because of the nature of the place they're working on and it was in that coughing fit that I finally heard my voice again. After they finished, I cleaned up the residual secretions, popped on the Passy-Muir valve and called Mike and Cam on FaceTime. I was finally able to vocalize good morning.

If you haven't heard of the Passy-Muir valve before this (like me), I encourage you to look into it. It is an incredible story and an incredible little invention. My biggest fear after the procedure was that I would be tied to a humidification machine. The air taken in through the trach goes straight to your lungs and loses any humidification and cleaning that it would get if it passed through your nose and mouth. Thus, the potential for drying out your lungs is a very real possibility ... as is a bug flying into your trach. Initially, since the trach I started with was too big, we were unsure if I'd be able to even use the PMV, let alone not be tied to a humidification machine. So for 5 days, I wrote lengthy emails to my ENT team, outlining how they needed to recall this procedure was preventative and that they needed to approach it from that angle and figure out a way for me to maintain my ability to speak and to be active - not tied to a machine. I have two small kids and it's incredibly important that I can do both. The PMV, combined with the smaller trach, achieved this. And I'm so grateful. I'm able to be up and around all day without the humidification machine, and just utilize the humidification machine at night, since you're not supposed to sleep with the PMV. It is a huge weight off my shoulders to be able to do this.

The humidification machine uses a trach mask, tubing and sterile water to deliver a bubble of humidification right to your trach site. It also sounds like an old hotel AC unit. This sucker hums ... loudly. So, as if I didn't have enough to get used to while sleeping - a trach and a neck brace - I now have to learn to sleep (another applicable S word) with the sound of a generator running in the background. And before you ask, yes - I've researched if quieter machines exist and am looking into how I can get my hands on one. It's on my list.


1 comment:

  1. Hey Melissa! I read all the beautiful stories you've written. I'm simply running out of words to appreciate the way you have penned down your thoughts in such a beautiful manner even at this juncture. I've never come across a warrior like you. You are certainly an inspiration for many. I'm sure that you are going to win this battle! Put all your energy to fight against it and show that you can never be let down. We are praying for you and your family.

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