Jan 22, 2015

6 Months Trach Free!

Wow! It's been 6 months since Ainsley got her trach out on 7/21/14.

Intubated at birth....

....until the disappointing day we learned she wouldn't escape the trach.

After it was done she seemed happier. I think that's nearly a smile. 
She went on to live a good life because of and in spite of her trach.
It wasn't easy.
In fact it was damn hard!
But we did it! 
And we are stronger for it!
And we met lots of amazing people because of it and in our quest to get rid of it. 
We have told our story and that has helped others going through similar things.

Now that the trach is out things still aren't easy.
But they are getting better
Ainsley's stopped removing the CPAP mask at night. 
I guess she knows she needs it. 
I think she's eating better now that the trach's gone and we are hoping to remove the g-tube! 
We are in the process of scheduling stoma closure surgery for the summer. 
Her airway still isn't perfect. 
She still can't cry and breathe. There is no sound.
Perhaps one day, with growth...she will breathe easier. 

When they trached Ainsley they didn't understand what the problem was exactly. 
I think it's pretty amazing that they never really figured it out (other than the swelling that wasn't there on day one but developed over the weeks and was obvious but long term temporary until her fundoplication). 
It didn't resolve as quickly as they initially thought it would. 
She never had surgery because there was nothing to "fix" and yet clearly something was wrong. 
Taking the trach out was a huge leap of faith.
When I ask her, she says she wants the trach back. :( But sometimes she says she prefers "no trach".
She's funny like that. Non-verbal kids are tough.
If I had to guess I think she prefers having no trach during the day, until it's time to go to bed and wear the CPAP. Then she wishes the trach back. But that's pretty difficult to communicate with an AAC device.
Now that we've made it past the 6 month mark and part of cold and flu season I am actually thinking
this decannulation might really be "for real". 

Here she is today. 
Still happy. Either way. Trach or not.
Love this girl!


  1. Love! Ainsley looks amazingly grown up! So happy to catch up on your life. I find it really fascinating. You seem to be able to do so much and your entire family is so talented! Congratulations on being trach free!!!

    Love and miss you!
    Christy xo