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 http://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.

Views: 91

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

Comment by Eunice Rivera on December 17, 2009 at 4:35pm
Debbie, I watched the video and I hope a lot of people watch it because we all are guilty of taking many things for granted. Like coughing, most of the time we don't even realize that we did. This was a reality check for the PPMD family to realize what some of the boys are having to deal with, what the younger boys will probably have to face in their future and what some of us already went through with our sons that have lost their fight. Loosing my son three years ago at the age of 26...I felt like I was done with Duchenne. Reading all the comments has made me realize, I will always be connected to this horrible disease after all it is what changed our lives forever in 1986 and what finally took his life. He also was a fighter and would tell me to FIGHT for him if he had chance. I want to continue to FIGHT for him by being here for other moms. CHRISTmas is the love and compassion we show for one another, even if we're stuck in a hospital room. I will be praying for Nick's speedy recovery and for peace in your heart.
Comment by cheryl cliff on December 12, 2009 at 8:39am
Thank you for sharing your experience with the cough assist, we will keep it in mind as we go along the road a little further with our son. Experiences and information keep dmd parents glued together. My heart goes out to you and your family this christmas, sending prayers and good wishes for a quick recovery for Nick and a sense of happiness to you all.
Comment by Ian Anthony Griffiths on December 11, 2009 at 4:27pm
Suctioning is a real life saver for me, tried cough assist but i actually felt worse with it, its not for everyone but im so glad it helps your son. Its real tough going in over this period but your fighting spirit is fantastic, all the best. God Bless!
Comment by Michelle Gonzales on December 11, 2009 at 2:20pm
My thoughts and prayers are with you and Nick! You both seem to be very strong and are truly correct when you say not to let this disease win in any way. Dealing with it daily is very hard. But we all need to know and remember that our sons are not this disease, they have personalities and other physical traits that make up who they are.... DMD is just one part of who they are - not the whole! Good for you and for Nick to have a wonderfully loving mother.
Comment by Rosalie on December 11, 2009 at 2:18pm
Our thoughts and prayers are with you and no matter where you are spending Christmas the love you have is the important part. Reading what you wrote expresses the love you have.

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2018   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service