Decannulation Day Video

Last week was big. Big like a hurricane, or like a skyscraper, or like the Titan Beetle (which, FYI, is the world’s largest beetle<– and I would know because 2/3rds of my job is basically just reading books written for seven-year-old boys).

Just like getting the trach, losing it is a lifestyle change. I was telling someone recently that I couldn’t wait for Simeon’s decannulation because it would be “one less piece of equipment” in our lives but that isn’t really the truth. Trach parents know that decannulation actually means one gabizillion less pieces of equipment (and trust me, that’s a lot because I had to make that number up). It’s lightened our load but, more than that, losing the trach means that Simeon is safe.

I still find myself checking his baby monitor every 5 minutes after we put him down, a habit I’m not sure when I’ll break. I used to check because he could have pulled his trach out, or untied his trach ties, or yanked off his ventilator tubing, or thrown his humid vent onto the floor, or done any number of things that would jeopardize his ability to sleep safely. Now I pick up the monitor with the same urgency as before, but I only see him scuffling around, nuzzling his pillow and blowing raspberries into the darkness. Old habits die hard.

I am learning to relax a little.

Even with all the change, I didn’t cry on the big day. I spent so many months preparing myself, worrying, and fearing what life would be like without that tiny piece of lifesaving plastic, that when the day actually arrived I had nothing but joy left. We were ready. Just like we were when we got the trach in the first place.

And we thank God our little nugget-of-snuggles has reached this point.


Photos from Simeon’s decannulation day. He would not let go of Dr. G (our ENT) and I’m pretty sure Sim would have gone home with him and lived out the rest of his life in happiness if I hadn’t wrenched him away. I must say it’s nice to watch your kid go back to the OR so peacefully. He didn’t even say goodbye…



Dr. S (our pulmonologist) came by for a visit and got suckered into feeding Simeon like a baby goat. It goes without saying (a dumb phrase because clearly I’m about to say it right now…) that Dr. S is the king of above-and-beyond doctoring. If I had a medal I would give it to him, also a crown because of being king and all. Also he reads this blog so clearly he has exquisite taste

I really wanted to share our day with you and fill you in on all the decannulation details, but I realized that with so much going on it would take quite a long time to recount. Since I assume you’re like me and have no patience for lengthy blog posts, I decided to video the whole thing (like a boss) so you can watch our three day journey in five minutes.


Music is “The Man With the Golden Toy” by Lulu Mae
You can watch the story of Simeon getting his trach HERE.

Lovely view from the 8th Floor

Thank you all for your kindness and prayers over the past few months (and years, if we’re being honest). This day has been a long time coming!   


  1. says

    Thank you for making me cry before even getting up this morning. Beautiful. Being without a trach will make your lives so much more streamlined. They save lives and serve their purpose. I’m glad I got mine but I’m also happy I got it out. Love you guys! The healing is crazy! The human body is a miracle

    • says

      It’s seriously amazing watching the hold close up all by itself. It seemed so odd to just take it out and be done with it. Our doc said we didn’t even need to bandage it or anything. Wacky.

  2. says

    I commented on FB but wanted to leave a comment here too ( because yay! New blog comment!) I was so teared up during your video. Happy tears though, not a lick of sad about ’em- just so happy that your brave little boy is overcoming and doing so well! Also, watching him wheel around the hospital hallway, that kid is amazing. Thank you so much for sharing him with all of us!

  3. says

    It goes without saying (though obviously, I’m going to say it anyway), but Simeon is A-DOR-ABLE! I laughed, I cried….this was just awesome.

  4. says

    Wow, so happy for Simeon and your family! I’ve been a reader for a while, and always love checking in to see his adorable face, and the way you share his growth and development. That video is precious. Congrats!

  5. says

    I , too, cried during the video. It was so beautiful! My son (16 mo, with SB) watched with me and he just loves Simeon. He kept laughing with and talking to him. It is so great to have the trach gone. We rejoice with you.

  6. says

    It’s strange, but he somehow looks older without his trach! Like he grew up a little in the space of those three days. So cute, and so happy for your family in reaching this milestone!

  7. says

    Is it possible to fall in love with someone I’ve never met? Simeon is as cute as a button :) I’ve been a reader from the beginning and your story has touched me. I am loving your blog, and your enjoying watching your Simeon grow up. I have learned so much and for that I thank you.. Thank you for your honesty, that you for sharing your story with all of us. May God’s blessings continue to shine upon your family..

  8. Renan says

    Hi Mary Evelyn, I discovered this video while researching decannulation and I’m so happy and grateful that I did! Thank you for sharing! Our daughter Zoe has Treacher Collins syndrome and had to have a trach at 3 days old. She is now two and after having jaw distraction surgery + choanal atresia surgery twice, we are preparing for decannulation! You (and your beautiful family) are an inspiration and this video filled my heart with such peace and love that I truly felt some much needed hope…and calm 😉
    Blessings of love, health and happiness!
    Renan xox

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