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Sunday, March 7, 2010

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.

14 comments:

jennifer said...

Hi, I have been following Christian's journey since I found the link on Brody's caringbridge page. I have 2 boys and we have been praying for your family on a daily basis. I have a background in special-needs and was so excited to read this post. May He continue to bless your family and may Christian continue to heal under His guidance.

Following HIM said...

Woo Hoo Christian! What a BIG boy! He may have had other plans than what the doctor may have but good for him!
~Elyse

Alicia said...

Incredible!! I am so happy for you all! Christian is writing his own book, that is for sure! Lola is so cute and precious too.

Have a great week and soak in all that comes with a naked neck. We hope to join that club soon too.

Carol said...

Congrats!! And I wanted to say I love the quilt!! I found out about you from one of the Feb 09' Moms. They posted about you in our group early on and I've been following your blog. It's absolutely amazing to watch the progress!! What a strong boy!!

Makenzies Miracle said...

Whoot whoot!!! Go Christian!

Eliisa said...

Such awesome news! Leave it to Christian to do things on HIS schedule, not anyone else's! :) You go, Superman!

Anonymous said...

I cant stop crying. Im so happy for all of you. I have been following Christians Journey for a long time and he, you and everyone around him never cease to amaze me. Christian looks great, and youre right Lola is just too cute to leave out. Congratulations!! Keep up the Great work Christian!!

Anonymous said...

You Rock Christian!!!! Amazing little boy! God is working in you. So many people are praying for you and love you!

Tonya

Anonymous said...

Another follower from the early days just chiming in to say that this post made my day. What a miracle you have on your hands. I'll continue to pray for your little man. The sky is the limit.

tesyaa said...

Wow! What a happy post!

Fighting Joey said...

Way to go Christian. That is awesome. Joeys g-tube story was the same. Our kids definitely have their own plans. WHOO HOO!

HeatherS said...

FABULOUS!!!!! Congratulations Christian.....you little fighter you :)

Annie said...

ROCK ON Christian, baby!!!! LOVE YA! It's AMAZING how that worked out! :) xoxo

Anonymous said...

What I have admired about you from the beginning, Shauna, is the grace in which you carry yourself. You fight the good fight and allow things to happen when they are destined to happen. Your son has certainly picked up this natural gift from you. Bless you and your wonderful family. Yay Christian, you ARE a superhero! -Rachel

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