Day 92 | DECEMBER 11, 2021
Good Evening Friends, today is day 92 of our new and amazing life!
Today is the day Charlie is getting her tracheae collar downsized!
I arrived at the hospital right at 9:15a ready to see Charlie trachea collar being downsized!
However, she was still finishing her wound care and we had to wait until she was done. As I waited outside of her room, the respiratory team arrived with the size 6 tracheae collar. I saw that and I was confident that it would actually be happening today.
Around 10:40a , one of the ICU doctors arrived and was ready to perform the change, he asked me to step outside of the room while he did the procedure, as I stepped into the hallway , he said it will only take 15 minutes, and I will let you know once I am done , you can wait at the waiting room outside , to which I replied, actually I will be right here ( outside of her room ) , I do have permission to be inside the unite at any given time , he looked very puzzled at me until Charlie’s nurse confirmed that I was allowed to be there.
The doctor was out of Charlie’s room within 10 minutes, she did extremely well, as she always does , when they downsize a trach collar, most patients may experience some discomfort and sometimes difficult in breathing, due to the gap between the larger hole from the previous collar, but Charlie didn’t had any issues , thank God.
They will keep an eye for the next 24H and on Monday, Charlie has an appointment with the speech therapist to start the speech valve training, I already know Charlie will do very well, since I can already hear her voice coming thru on this smaller collar .
Charlie is very excited about the idea of talking, but much more excited about the possibility of drinking liquids, she wants a ice cold glass of sweet tea you should see her eyes when she told me that, it will be an incredible moment when that happens, we still weeks away from that happening, but today it was the first step on that direction.
I am so grateful for today, I have dreamed , I have done extensive research to try to advocate and convince her doctor to downsize her tracheae collar for the last 2 months, it became the source of my frustration in regards to her well being, because with the smaller size collar, Charlie will be able to talk, reducing her frustration by 90%, since she will be able to clearly express what she wants to say, and she will also will be able to have liquids and eventually food, this will improve her quality of life during the next few months that she still has at the ICU, it is truly a day to be remembered on this journey!
I know it may sound small, but in a way this trachea collar became the one “thing” that i associated it with my frustration, and the reason been is , because this “thing” would give my wife a better quality of life, and that is the second most important item on my advocacy agenda, after her survival.
Yes, today I feel accomplished, I am finally able to give my wife a little bit of dignity during her recovery stay, it is not easy to be where she is right now , but if she can have a little bit of autonomy given back by being able to speak with her voice, it should be a powerful boost for her morale , and the ability to drink, it will make her human again, can you imagine , being awake and conscious and not be able to drink a sip of water for over 3 months !! If that is not a form of torture, I am not sure what we can call it ( yes, I know it is medically necessary and she is not dehydrated), but it is psychological and Charlie had to show incredible mental strength to overcome the urge to drink, a basic human instinct/ necessity , so this is why the “thing” was the source of my frustration, and I am so glad that today, this source of frustration is gone !
Now let’s pray that all goes well on Monday when they install the speaking valve and Charlie will finally have her voice back!
Today my visit was done by 1pm, and I had time to return home and spend a great time with the boys and my family, it was really good to play with my boys and I am so grateful for my family for helping me in raising our boys, I am also thankful for the friends that continue to come daily to take baby Julien in daily walks, your help is essential to allow me to continue to visit Charlie daily.
May God Bless You.
André
