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Tuesday, September 2, 2014

A Bitter taste of truth....

Ayla had a check up today at CF clinic. Here's the 4-1-1
Despite all she has going on things went as well as can be expected. She had lost 2 pounds since Aug 4 (which brought her BMI down to 33%) in CF patients they want the BMI to be at least 50% since we know weight directly affects lung function). I'm not sure if it's increased activity or illness that's causing the loss, her appetite has been normal. 
She sounded pretty good when the doc listened to her take big breaths. Her lung function plummeted last fall when she was hospitalized for Mono and other infections and has never recovered. We talked about reasons for that, could have been permanent damage done to her lungs as an infant when she was FTT (failure to thrive) since we know
Weight affects lung function and she struggled for two months to put on ounces it could have affected "the generations" of airways that were being formed (as the Dr stated). Another reason could have been permanent damage from last falls illnesses. 
The Dr was on the fence about admitting her. None of us like the trend we are seeing with her and we need to stop this and gain some ground back. So she ordered a CT to compare it to last falls and go from there.
Shortly after the scan the Dr called to report to us. She said that it appeared "pretty good" some of the inflammation and issues that were present in 2013 had resolved themselves. BUT what she did see was 3-4 airways with bronchestatis.


Bronchestasis is basically the scarring of airways, most people with CF end up with this but at Ayla's age it's "early" to show. CF is a progressive disease and there is no fixing bronchestasis. Once it starts it's likely to continue.

How do I feel about it?
Well pretty crappy. Ayla appears healthy and happy, exercise is good for her lungs but too much activity causes weight loss. I was praying not to get admitted but to be told there is nothing we can do if we admit her right now is more frightening for me. I don't get a clear picture of her health without traveling 4 hours for invasive tests. CF is peculiar, it hides and when you think you have a handle on it -it punches you in the gut. 
I can't control this, I'm at the mercy of god and his plan. A trip without a map makes it hard to travel. 
The last year we have been battling to get back what we lost and today we found that on top of being unsuccessful we have hit another dreaded CF milestone. 
I know that the impossible gives God the room to work and get the glory but I feel like I'm gambling with my kid. My most precious possession. I know that's what faith is, I'm always learning about faith. And sometimes I suck at it. I can say the right words but when it comes down to life or death for your kid you don't want "chance" you want "certainties."
I always felt like CF would be a part of her but not begin to affect her as early as it has. I don't know what the plan is God but I'm after quality of life and happiness for her. I know that he is too and in his own way he is working. Even though I can't feel it today his mercies are new every morning. 
I'm counting on that for September 3rd God. 
I am a "plan person" I need an attack plan and accepting this for Ayla is just foreign to me. Don't get me wrong, her Dr is amazing. And she is aggressive and "goes hard" against CF. She gives it to me straight and I trust her. This is just not something you can sugar coat, it's a bitter pill and it's not going down easily. 

Please pray that we find a way to reverse what's been done and to prevent this illness from taking away her spirit that I love so much. 


  1. That's a huge blow. I'll be praying for you all - and her doctors to figure it out!