De-can Sam

Decannulation.

Naked neck.

No trache.

De-Can Sam.

We've been planning to have Christian's trache removed in the spring. We saw the Pulmonologist back in September. Our plan of action was that we'd go from the PMV to capping. We'd downsize the trache for easier capping trials and work up to capping for 24 hours a day - all night and all day.

That was in September.

Then we focused on other things. Therapies, medications, supplements, HBOT, possible seizures, EEG's, feedings, and on and on. Capping trials and trache stuff took a seat in the back.

We were told traches were not removed until after cold and flu season. That seemed reasonable enough, considering the risk so we weren't pushing for trache removal. I was comfortable with that because it would give us a few extra months for capping. I couldn't even get an appointment with our Pulmonologist until mid April.

I finally got serious about capping one day. Christian was laying down and I simply switched his PMV out for his cap. He acted as if I had done nothing, meaning he was just fine breathing on his own. I knew he was ready.

We've been capping all day, almost every day for about 2 weeks now. We hadn't done it at night yet. Not that I didn't think Christian could do it, I just hadn't gotten there yet. And the doctor said one of us would have to stay up all night with him monitoring his oxygen saturation. Fun.

But I had plans of decannulation (getting the trache out) in April. Just because I heard that's when the doctors would do it, if they agreed to do it. They didn't know they were doing it yet, but those were our plans anyway.

I guess Christian had other plans.

This morning Manny was up and about early, as always. He went to check on Christian.

"Christian's trache looks like it's out." - He tells me.

"Well, put it back in." - I said.

"It won't go in." - Husband.

This is where I jumped out of bed out of panic. Not because I thought Christian couldn't breath. Not at all. More because I didn't know what the procedure would be. Do we take him to urgent care? Do we call the doctor? What happens when a trache won't go back in?

How did this happen? Well, Christian's trache will slide in and out (never completely out) as he moves his head, but it's always secured in the same spot by what's called a trache tie. What ended up happening is that Christian's trache slid so far out somewhere during the night, that only the tip was still in the stoma (opening). The rest of the stoma closed (this, I'm told, can happen within hours). So we couldn't push anything through.

I called the Pulmonologist on call and he listened to the scenario. I told him I didn't want to take him to the ER or urgent care because of the wicked RSV season we're having. And in the back of my mind I thought - if he can breath capped and we're decannulating in April, why would I rush him in to surgically open the stoma for a trache that we'll be getting out soon?

The doctor asked questions. I told him our history. He asked about a Bronchioscope. I said Christian didn't need one because he doesn't have airway constriction. He originally got a trache because of his cough and gag reflex (which he has, long story).

So after his risk analysis, as the doctor put it, he said why not take advantage of this mis-hap and go ahead and leave him.

Just what I wanted to hear, but I wasn't expecting to hear.

When we found out he had decannulated, I immediately hooked him to the pulse-ox to see what his oxygen saturations was. Yeah, it was 97-100% all day long.

So that's it. He's trache free. I feel like I've been kicked out of a club. No more caps, valves, or traches? How could this be so quickly? As always, Christian is leading the way.

I'm just calling him De-Can Sam. It's my omage to Tucan Sam from Froot Loops. You know, follow the nose...

I see a chubby neck. I've nuzzled this naked neck for the first time in eight months. I got to kiss this neck without moving something out of the way. It's just there, plain and clean and soft, ready for mommy's kisses.

See?

We put gaws and a bandaid over the stoma to protect it from germies.

And we don't want to leave out little sister...

She's just too cute to leave out.