Foiled Again!

We’ve been rocking the cuffed trach for a few weeks now. I’m feeling much more confident that I won’t expand this sucker to a width that harms Parker’s trachea. Someone put that thought into my head and getting it out took something along the lines of a mental chisel.

Have I ever mentioned that I tend to worry? Just a teeny bit. Nothing too intense. Okay, not way too intense. But worry is a huge part of my DNA. I’m working on it.

But it’s taking a really long time.

And patience isn’t one of my strong points either.

This baby has absolutely cured the issues we were having with Parker’s oxygen levels tanking.

But for each issue solved, another comes along to take it’s place.

That’s the way the ‘medically fragile with special needs’ game is played. It’s like a never ending game of Whack a Mole, except the Mole, if not properly squashed, can bring a very real end to your child.

Look closely at the pic of the cuffed trach above. See what looks like a little flat balloon connected to the little plastic string thingie? Some kids, on discovering this hanging down their back, may every once in a while pull or bite it, thus rendering the cuffed part of the trach useless.

Other kids, our Brave Hero included, discover one more damn cord hanging off their body and make it their life’s goal to bite, pull, or just rip off the latest offender.

Yes, that innocent little face has gone through TEN cuffed trachs so far. We put the string under his trach tie and then even TAPE it to his body. But this kid who feigns the lack of small motor control to properly hold a pencil, can reach behind himself, and using his thumb and fore finger, grab the teeny little plastic string and rip it right off.

This could be an issue.

Especially at 10:00 at night, in the dark with your little head lamp strapped on, you go to inflate that cuffed trach just to discover that you’ve been foiled yet again.

Anyone have any tried and true cuffed trach experiences and tips.

I sure could use them.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. I got nothin but love & support. And oh My! What a cutie he is. Good luck.

  2. SUZANNE REBER says:

    There is another brand of cuffed trachs (bivona brand). The cuff on the end can more easily be reattached (sometimes). We have had cuffed trachs the majority of the time we have had our daughter (9 yrs). Sometimes we can re-attach it and it does seem smaller than the shiley but bright blue. The only problem we run into is that they are 3-4 times the price, we do have to clean them and sterilize them so that we don’t have to order so many. Good Luck!

  3. Any way he would sleep with mittens on? Mitten help on with drawstrings?????? Or duct tape? (Kidding, just kidding)