DECANULATION!!!!!

FamilyMedical

Jan 19

I think it's actually happening this time. Sam is scheduled to get decanulated (get his trach out permanently) on March 22nd!!!!!! We’ve been told Sam will be decanulated in the Spring many times, but they have never scheduled a date. Someone pinch me. It feels real this time.

Although Sam's had a rough almost month now, we had a really good run and we avoided a hospitalization. This is a big deal for Sam. His doctors wanted him to be able to be successful (stay healthyish) in school for a couple of months before they gave the a-okay to be decanulated. I hate to say this out loud, but before now, Sam had never gone more than four months in his whole little life without a hospitalization. He's seven. Do the math. We are now going on eight months! Okay, now knock on wood everyone.

I know I’ve said it before, but one of the hardest parts of having a special needs child who is also medically complex is he can’t tell us what’s wrong. It becomes a guessing game fairly quickly along with consulting with many different specialties, bloodwork, stool samples, x-rays, urinalysis’, etc. Thank you Lord for home care nursing.

He's on day two of being back in school since before the holiday break. Hoping he can stay healthy and continue to stay in school until the big day.

We are ecstatic and terrified for Sam to get his trach out permanently. It’s sounds a bit crazy, but you get used to having a lifesaving breathing tube after seven years. In our world, it's a safe airway. I watched Sam die four times with one of those times needing more than ten minutes of chest compressions. He is alive because of his safe airway. I think this helps in understanding our fears of having his trach (safe airway) removed permanently.

What does this mean though?! It’s literally life changing for us and Sam. It means…

…Sam can swim.

…we don’t have to get terrified every time Sam takes a bath or is around any kind of water.

…I can drive in a car with him by myself.

…he can go to school if he doesn’t have a nurse.

...he won't have home care nursing, which is exciting, scary, and sad all in one. These strangers become some of your best friends.

...traveling hopefully won't be as much work.

...we don't have to do daily trach cares.

There are so many more reasons, but you get the point.

For us, swimming is at the top of our list and I know it will be at the top of Sam's too. Sam LOVES the water. We joke that every time we give him a bath, he tries to kill himself, quite literally. His new thing is to try to lay down in the tub. When he realizes I'm holding his arm a bit tighter, moving quickly to pull him up and away from water, and clearly anxious, he laughs and does it more. Okay, bath time is over now. I can't imagine giving him a bath and not having one hand on his arm the entire bath time and not feeling nervous the whole time. Swimming lessons will definitely be in his future. Is there swimming in the Special Olympics?!

As always, we hold high hopes and low expectations for March 22nd. He will go under anesthesia for the umpteenth time and his ENT will check for a third time to make sure his Laryngeal Cleft is still intact, meaning the surgery he had in Cincinnati worked and there is no hole in his airway. If that's the case, which it will be, his ENT assured me I would get to do the honors of taking out his trach. I have done this a thousand times, but have always quickly put a new one in. This time, I won't.

We will stay one night in the Pediatric Intensive Care Unit and go home the next day if all goes well, which it will.

It’s been a bit since my last update. No news is good news, right? Here are a few things we’ve done since August.