There is an adorable little boy named Tucker, from Virginia who also has EA. I was put in touch with his mom, Ellie as they were beginning this journey. Like us, they decided to move Tucker to a hospital that they felt was more experienced, and despite my best efforts to sway them to Minnesota, they went to Boston 🙂 So, tonight Ellie blogged, and said that Tucker will get a trach next week – my immediate thought is “yippee!”, but I’m not sure at the stage they are at right now she shares my excitement.
Anyways, prepare for a long post – I offered her some words of encouragement, she dared me to “keep ’em coming”….. so tonight I’m writing a Dear Ellie letter – to tell her about the amazing journey that is just beginning and why I embrace the trach 🙂
Dear Ellie (or any other almost trach parent),
We saw Isaac’s trach coming, we were told repeatedly to prepare- but we were sure the doctors and nurses were wrong. I am a special education teacher, all I knew of trachs was very extreme – and not where I envisioned Isaac, in a million years. I didn’t want a trached child. The night it became more a question of when, not if I had a breakdown. I cried for several hours while I rocked him. I mourned him – and when I think back I think it’s because I knew nothing about what it would be like. I didn’t know how beautiful this would be, I had no knowledge of anyone else who had been through this.
The night of Isaac’s surgery I saw him for the first time without a single tube on his face – for the first time in 4 months I could see his WHOLE face. I cried again, tears of utter joy.
My baby who had been sleeping upwards of 20 hours a day and was miserable overall woke up – and he woke up full of life, and smiles, and love. I think he knew from the start that he needed this, he was just waiting for us to jump on board. He was MEANT to have a trach.
When we arrived in Minnesota, trach and all we learned again what a good decision this was. Isaac’s stretching process kept him paralyzed and sedated for a total of 11 weeks in his first 10 months of life. Inevitably, he would have been trached. Because he came in trached life for everyone was easier. He didn’t have to be intubated and extubated, weaned dramatically off a vent, and the smile on the face of the Anesthesiologist when they hear your child has a trach is priceless. He did require some weaning, don’t get me wrong – but it was much easier.
When we came home from Minnesota Isaac was 13 months old, and still had that trach. As a result we were given 16 hours a day of nursing care. Oh, the ups and downs of nursing care! It is strange at first to have someone in your home 16 hours a day, someone doing what you think you should be – taking care of your baby. But, you set the limits – your nurses understand that this is your home and your child. When you are ready there are many parents that can educate you on this – but always know that overall you are in charge.
I will say, nurses are truly a blessing. Our nurses are like family. Some have been with us for many years, we hang out and chat like old friends. They love my Isaac like he is their own (we even refer to one as the boy’s “African mama”). They take care of all of us, and we are eternally thankful.
Isaac’s trach is beautiful – it is a part of him. When he learned his body parts he also learned his trach, and when I ask him what makes him special he points right to it. Now that we are getting to a point of possibly losing the trach in the next 6 or so months (after 4 years!) I think about how much I will miss it. I also think about how he will miss it. We may both require therapy 🙂
Now – it’s not all butterflys and roses. Winter sucks, cold and flu season REALLY sucks. Isaac has spent what felt like entire winters in the hospital. Trach kids get hit harder, it’s just the way it is. Emergency trach changes suck – your first one will leave you shaking, but then you’ll realize what an amazing thing you did and you’ll look around for someone to high five! Some people will stare, you’ll tell Tucker it’s because he’s beautiful, but every so often it will bother you. Loud suction machines suck – but you get used to them. Dealing with medical supply companies REALLY sucks, but you’ll learn to fight and sound sweet all at the same time 🙂
I am not the only trach mama in the world who can tell you these things, and more. As I read your blog tonight, I flashed back to the feelings I felt before, during and after Isaac’s trach. When it was all said and done I laughed about how silly my fears were – but they were oh so real. I’m not sure if it would have helped to have someone tell me these things, but I think it would have. Sometimes it’s nice just to know you aren’t travelling down this road alone.
Today – I love Isaac’s trach and ALL it has taught us, and all it has brought us. The friends who have become family and the support it has brought us is hard to explain. Allow others to come in, let them get to know the and improved Tucker – and let him teach them the way Isaac has taught us.