We are using “trach ties” as a unit of measure because we change them and do all of his trach maintenance right after his bath every night. So the number of trach ties is the number of evenings left until decannulation day.
Since about ’15-to-go’ day, we have been singing this little song in preparation.
I have been trying to talk to him about surgery and staying in the hospital and getting him ready for the adventure.
We sometimes linger when doing trach tube changes, not putting the new one back in right away. It has given him some time to feel what it will be like without the tube in his airway. Unfortunately, he has a new game he likes to play.
This video is full of loud rudeness. 🙂 🙂
He is just squeezing his chin down on his chest and blowing as hard as he can out his trach-hole. He thinks it is hilarious and so does Trevor. When the trach is removed for good, he will not be able to do this. They are going to cauterize around the stoma and make it raw to encourage it to heal closed. (He won’t be blasting air out of it!) He will also be encouraged to hold his neck dressing when he coughs to keep it from opening up. It should close all by itself in about 2 weeks.
Five more trach ties to go! Five more trach ties!
Our nerves are raw, but we are ready.
I love Brendan’s singing. 5 days to go!! It’s coming up fast!
Those are some rude noises, but it’s nice that he’s able to get a little feeling of what it will be like to not have it.
I wish I could be there with all of you for this big milestone in Brendan’s journey. I will surely be there in spirit, and be anxiously waiting for updates.
Lots of love and “smothers” with kisses! 😉
Gramma xx
It is awesome that you are only a few days away from something you have been waiting to have happen for so long! Brendan is such a trooper, and it is amazing all that he has done, the odds he has defied, and what you all have done to get him there. We can’t wait to hear how things go next week!
Good morning from the Lake House!!!! Brendan’s videos are priceless!!!! Trach farts are delightful….he will definitely try them post-op…..I know I would!! 🙂 However, he will discover that it is not the best idea and he will heal quickly!! The next few days we will be “on the road” and will hopefully be able to check in on Brendan’s progress!!! Sending tons of prayers, hugs and love from now until your family is re-united and trach free!!!!! Love you!! 🙂
Quite a cool ( “Trachfart” ) beginning to a great new adventure. We’ve all been looking for this day to come………another cool beginning to enjoy following.
Decided to go to a hobby shop in Downers Grove, yesterday. On the way home, the “battery” symbol kept popping up on the dashboard. It all went downhill from there. Car is in the shop ( $150.00 tow home ) for what looks like a new alternator, and, possibly a new computer.
Big thanks to Grampa Dusty, for getting me home from the dealership last night.
I would have, if given the opportunity, chosen a “better adventure”.
It’s a beautiful day here today, so I will take a bike ride over to Libertyville so I know how long it will take to get there, when the car is ready to pick up…….my “exercise” for the day 😉 🙂 🙂
Good evening from Hilton head, SC. Just checking in and wishing all kinds of “good juju” as Cousin Carrie always says, for Brendan’s big day!!! Sending hugs, love and many prayers that all goes smoothly!!! Much love!!! 🙂