Our youngest son, Emmett, has been through a lot the last four years, to say the least. I’ve written previous blog posts about the first and second phases of his recovery following a severe button battery injury.
He’s certainly had his ups and downs along the way – the slow but steady progress contrasted with the physical limitations of his injuries—but through it all the one thing he has wanted to be able to do the most is to play soccer like his big brother Ethan.
All of the progress he has made over the last four years has brought him closer to this dream. The esophagus replacement surgery in December 2012 allowed him to eat by mouth again. The laryngotracheoplasty (upper airway reconstructive procedure) he underwent this past October allowed him to breathe on his own without the use of his tracheostomy. And his airway and lungs have progressed so well that he was able to have the tracheostomy capped and he is breathing solely on his own right now.
The final step in order for him to be able to play soccer is to have the tracheostomy removed. When we originally came out to Cincinnati Children’s for care two years ago, the medical team thought it be might be 5-10 years before he would be able to have the tracheostomy removed, due to his damaged airway and the state of his lungs.
But Emmett’s strong will and all of the surgeries and therapies have helped him progress so well that he was able to have the tracheostomy removed this week! We are overjoyed as a family as we think about how life changing this will be for him and our family. On top of being able to play soccer, he’ll be able to:
Attend kindergarten without a nurse. Kids with tracheostomies, at least in the state of Arizona, have to be followed by a nurse at school in case there is suctioning or an airway clog. The potential for complications is great; a tracheostomy is a foreign object in the body, so it can get infected pretty easily due to the bacteria that grow in it. Before the surgery and capping of the tracheostomy, we typically had to suction it five or six times a day.
Take a bath. This sounds so simple but because the tracheostomy can’t get wet, so we would have him stand in the shower and use a washcloth to carefully wipe him down. Bath time is going to get a whole lot more interesting and exciting for Emmett!
Swim in a pool. We have a pool at our home in Arizona and he has never been able to get in it. The closest he has ever gotten is sitting in a humongous double raft by the steps while my husband and I are on either side holding onto it. So he’s pretty excited to start taking swimming lessons next summer – we already have the instructor lined up!
Leave the house without a suction and airway bag. Before the tracheostomy removal, everywhere Emmett went, two large, heavy bags followed him: a tracheostomy suctioning bag and a backpack with two extra trachs and trach ties. It was necessary to carry these items around in case he got a suction or airway clog.
Have a babysitter! Okay, so this one might be more exciting for me than Emmett, but now that his tracheostomy is removed, I have a few more options when it comes to selecting a babysitter now. Before the removal, the only adults who could watch Emmett were those who had been trained on how to care for the tracheostomy: me and my husband, his two grandmas, and nurses.
Enjoy Christmas, Arizona style. In Arizona, a lot of people have fire pits in their backyard this time of year to celebrate with friends and family. Emmett has never been able to get near them because of the dangers of breathing in the smoke through the tracheostomy. So this year he’s looking forward to sitting by the fire and roasting marshmallows.
But let’s get back to soccer, because that’s what Emmett is most excited about doing after the removal of the tracheostomy. Practice starts for our city league in January, and he’s signed up and ready. He’s picked out his cleats and shin guards. He told his physical therapist here in Arizona about a year ago about his dream to play soccer, so she tweaked his therapy to revolve around the sport. He’s been doing all sorts of different drills with her over the last year, including dribbling in and out of the cones with the ball.
It makes me so proud to see his determination. Emmett has shown us these last few years that nothing is going to stand in his way. He has overcome every obstacle that has been laid in his path and it makes me so thrilled about his future. Sure, he will have things to continue to work on, like voice therapy, but given how he has tackled everything else, I have nothing but excitement for what lies ahead.
It’s a very different viewpoint than what I could have imagined four years ago, and I am so grateful for the progress he has made, including the ability to realize his dream of playing soccer.