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A Letter to the Mother I Was Before My Son's Tracheostomy

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A little over a year ago on, May 13th 2015, my son had a tracheostomy. He was four and we had really been through the ringer with respiratory illnesses that whole year. He has epilepsy, low muscle tone, cerebral palsy and a slew of other battles. A tracheostomy, or a tube in the trachea to help with breathing difficulties, was brought up six months before we finally agreed to it, and my son’s pulmonologist asked me, “If you ever come up with what to say to parents to make this decision easier, please share it with me.”

Well, I didn’t figure that out, but I did reflect on what the last year has given our family and how much I would urge others to really try to see the benefits of a trach if it is brought up as an option to make their loved one’s life easier. I wrote a letter to myself; it was the best way I could think to show what has changed and how we have grown.

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My son nearly died from pneumonia and pseudomonas a month before we made the decision. We spent more than a hundred days in the hospital the year prior to having the tracheotomy. He had to get to that point before we gave in. I believe we made the right decision for him, at the right time. We had the guidance of amazing doctors and nurses who sat with us and discussed every detail and answered every question we had. That helped so much.

It really was the hardest decision we’ve made so far, and we have made many. It shouldn’t have been the hardest, but it’s very hard to see that when looking in from the outside. It was worth it. It was worth facing our fears as parents for one more chance.

To the mom I was before the tracheostomy,

I know this decision will sit with you as one of the most difficult ones you ever have to make. You are choosing to have a hole surgically placed in your child’s neck and neither of you will ever be the same.

But, it is going to be OK. You are so much stronger than you give yourself credit for. You have tackled everything up to this, and you will dominate this challenge too.

I recall the thoughts you are having.

Will it be scary?

Does the good outweigh the pain of surgery and recovery?

Are we unnecessarily prolonging his struggle?

Is it going to be strange to see something around his neck all the time?(This sounds so vain when I read it, but it’s how I truthfully felt at the time.)

How will I learn all this new information?

Will people stare?  …and on and on.

It’s OK to be worried, but life is going to get immensely easier.

This is a quick surgery. It takes about 45 minutes when it goes to plan.

You will be able to see his face again. Always. No tubes, wires, Bi-pap masks — nothing will ever have to be taped to his face again.

This could not be predicted, but it has been one year and he has not gotten pneumonia. That is a miracle after nearly losing him so many times to that pesky illness.

You will be tired for a while. You’re going to be overwhelmed with nurse schedules and supply orders at first, but like anything, you will adjust.

Training will seem intense and scary, but once you change that trach the first time, it will only get easier.

You can do this. You really can. Don’t doubt yourself. Other mothers and fathers have done this.

My shaking hands were the first ones to change Jake’s trach after the initial change. I did it. The sense of empowerment knowing what I could now do for my son was overwhelming. I could give him an airway.

When he gets sick now and secretions are heavy, and he’s working hard to breathe, it’s a simple matter of turning on a few machines and running a few nebulizers. At the worst, changing his trach.

We stay home now. We go to school now. We go to restaurants and the mall. We don’t hide anymore. Because of his trach, Jacob gets to live his life and you get to live yours.

The word “trach” is scary, but only when you’re on the outside.

To families like ours, the word trach is refuge, freedom, strength and endurance. It means pneumonia doesn’t have to win. It gives us the home field advantage.

A year ago, I felt like a trach was a horror movie I wanted to hide my eyes from, and I was spending so much time at the hospital with Jake, it became comfortable to be there. Today, as I listen to his nurse do his routines and get him ready for bed, I am comforted that he is home. We have control, and we can see his whole face, all the time!

I know it is a hard decision, but you are making the right choice and I’m proud of you. When they tell you life will be easier, believe them — even if it gets a little harder first.

A one-year veteran trach-mama

Originally published: August 25, 2016
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