On Thursday, December 17th, our 23-year-old son Nick will be entering the hospital to have a tracheotomy. We had hoped we would never have to do this but Nick is one of the minorities that cannot use NIV. We are very concerned and wish that he wasn’t going to have to spend Christmas in the hospital but we also realize that this is in his best interest and will improve his quality of life.
When faced with something like this it is easy to get overwhelmed and let living with this disease totally consume you. Well, I for one refuse to do that. I refuse to let DMD win in anyway. I refuse to give up and let DMD take my son without a fight. My family has lived with this disease for a very long time and has paid a very heavy price. But that’s OK if paying the price means my son will have more quality time with us. After all, he is the one that has paid the heaviest of prices without asking “why me” or even so much as a complaint.
On a final note my main objective of late has been to try and educate parents on the importance of cough assist. I can honestly tell you that without cough assist and suction Nick would either have been hospitalized or not here with us. He currently has multiple episodes every day where he isn’t able to cough out secretions that have accumulated in his lungs. The cough assist may look like a torture device but believe me it’s a lifesaver. Even though Nick hates the machine he’s quick to tell us when he needs it. If you have any doubts as to the effectiveness watch the video I made. Prior to starting the cough assist Nick’s oxygen level had dropped to the low 80’s and his nail beds were blue. You can see the video at https://www.youtube.com/watch?v=McQ1e5fS8yc
Our family would like to wish everyone Happy Holidays. We hope you are able to spend time with loved ones and that soon we will get the greatest gift of all – a cure for Duchenne’s.