December 22, 2011

Cystic Fibrosis Vest Compliance

Don't give up no matter how long it takes!
Six years ago today we received the news that Samantha has Cystic Fibrosis. That knowledge created a flurry of emotions including fear, shock, horror, and confusion. As I look back over these last six years I realize that none of my initial feelings would be the overarching issue we would learn to deal with…the DAILYNESS of this disease. I’m sure some people I know think I talk about Samantha’s CF way too much. Others don’t even know she has it. And somewhere in between those two extremes is where we live…daily making sure she gets the preventative (and not so preventative) care that she needs.

Imagine how many times a day you breathe, eat, and go to the bathroom. Every one of those bodily functions is affected by Cystic Fibrosis. Therefore, each time Samantha experiences these seemingly normal activities we must consider what her body is doing or what treatments need to be done. Because of that, it is impossible to discuss Cystic Fibrosis without speaking the word “compliance”. Here is a piece of our journey…

Merriam-Webster defines compliance as "the act or process of conforming, submitting, or adapting to a desire, demand, proposal, or regimen."

Merriam-Webster would define Samantha as "an antonym of compliance":
  • At 8 weeks she needed a spinal tap and fought so hard she stopped the spinal fluid from coming out. They barely got enough to run the needed tests.
  • At 1-year she screamed so hard at her annual blood draw that she cut off the blood flow completely. What should have taken a minute, took MUCH longer as we tried to calm her enough to get it out.
  • As recently as this week at her 6-yr annual blood draw 3 people had to hold her down…and they were working hard to do it!
There is no doubt in my mind our girl is a fighter.  The very part of her being that resists submitting to us is the same thing that will help her long term fight of this evil illness. But for now we battle the daily issue of compliance. I’ll use The Vest as an example. She has had The Vest for over a year, and to say it has been rough would be an understatement. Crying before, crying during, wanting to pause every couple of minutes, not letting me leave her side, and scared to talk because of how The Vest makes her voice sound. A treatment that should take 20 minutes has taken as long as an hour on some days.

As if that’s not enough, I also feel all alone. I don’t ever hear anyone else having these problems for this long. All CF kids will have compliance hiccups like this, but the parents try a thing or two and it all seems to fall into place. I’ve dreamt of the day that Samantha would happily watch a movie or tv show during an entire Vest treatment.

After 15 months, that day came THIS WEEK!

Tuesday we had the very first treatment that she didn’t ask for a single pause the entire 20 minutes. I was in awe!! So exciting! And then yesterday she played the Wii for the first time during a treatment! And once again she never asked to pause the treatment! She said, "Mom, this is awesome!"  Not only that, she told me all about the video game she was playing the whole 20 minutes!  I’ve never gotten more than a short sentence or two out of her! It’s seriously like dealing with a different child!
So I hope our story can encourage someone reading this who is in the middle of any kind of long term training with their child. Maybe it’s CF compliance. Maybe it’s been a year of potty training that feels like will never end. Maybe math isn't clicking no matter how you explain it. Whatever it is…don’t give up:
  1. Explore every suggestion you are given. 
  2. Keep trying without acting out of desperation.
  3. And above all, remember to love your child whether he or she learns to comply or not.
Just because it hasn't happened yet, doesn't mean it won't happen!


Stephanie said...

Amazing post, Alicia! I don't think you can talk about it too much. CF is something that impacts every day of your (and Samantha's life). How can you NOT talk about it? I also love how you apply the lesson of not giving up to everyone.

I can't wait for the day we have a reunion and I get to meet you non-compliant Samantha. I'm sure she and Ellie will have fun together, as long as there are no differing opinions. lol :)

Alicia said...


The good news is that she's balanced in her peer relationships! In a genereal sense (not 100% of the time) she plays perfectly well...I wouldn't expect any issues when she and Ellie get to meet!

Gindi said...

What a wonderful reminder to us all to pray for Samantha and to see those prayers being answered too. We love her so much and what an exciting development for you to be able to get her treatments in (though it's not anything like it, Will STILL fights me daily to give him his inhaler.....).

garfield1971 said...
This comment has been removed by the author.
garfield1971 said...

Thank you so much for posting this and for sharing your blog! I've wanted to know more about this journey but just haven't asked - so thanks! Now, I have to find time to read from the beginning. This may take me awhile! :) So glad to have met your family!!
Love, Anna C,

Sherry said...

I'm thrilled for you and Sam that things are falling into place. Keep up the good work Mama! :)

Green-Eyed Mama said...

You inspire me, Alicia. My heart is encouraged thinking of your family's persistence despite difficulties. Thinking of you with special love!