Day Seventeen – About CF

June 29, 2008 at 11:26 pm (Uncategorized)

Up to this point, I’ve mentioned Cystic Fibrosis only a bit in this blog.  I’ve alluded to Emily’s treatments a few times, but I’ve never gone into what CF means in our life.  It’s a pleasure to acknowledge that fact, because, it means that CF has not factored heavily into any of the days I’ve chronicled so  far.  In fact, CF hasn’t factored heavily into any of our days for a long while now.  (I’m sure there’s some Law of Nature that dictates that TOMORROW we’ll have a MAJOR CF dragon to slay, simply because I mentioned this…)

But, since CF is part of our days in a thousand small ways, I thought I probably should devote a bit of time  to it.  I won’t go into to what CF is.  If you’re reading this, you know me (So you know at least the basics already) or you’ve come here from CysticFibrosis.com.  If you’re not in one of these categories, and  you care enough to learn, check out www.cff.org

So, what does CF mean to us on a daily basis?  Essentially, we are at a place where all we have to do is stay in a routine of medications and treatments.  Oh, and make sure Emily eats.  That’s the hard part.

A “treatment” for us, right  now means that Emily gets two Puffs of Albuterol from an inhaler, then gets either one or two medications (Hypertonic Saline and/or Pulmozyme) through a nebulizer.  The  nebulizer medications are done while she wears a therapy vest which vibrates very, very quickly.   After her vest session is finished  she takes one “hit”  of Flovent from another inhaler.  The purpose of all of these steps in connection with  each other is to open up her airways, thin the mucus that builds  up in her lungs as a result of CF, shake the mucus loose, break the mucus down so that it can be expelled from her lungs, and promote healing of the  lung tissue.  This all happens twice a day.  The whole cycle takes about 35 minutes, right now.   This can  change if  we have to add a medication, do longer sessions, whatever.  We haven’t had to make any changes in  a LONG time.

Every time Emily eats, she takes a digestive enzyme.  This is so second nature that it’s (almost) easy to forget.  We (or someone) have given Emily enzymes with  every meal since she was four days old.    Amazing.  Emily also takes a pro-biotic to help her stomach keep a good balance of good bacteria which  aids in digestion and keeps the evil villian c.diff away.  If you have  not been acquainted with the  evil villian c.diff, conisider yourself lucky.  Very lucky.

Since Emily is not a voraicious  eater, and, since her body needs four times the calories as a non-cf kid, and because her  doctors want her  weight to be in the 50th percentile , we do our best to make sure that she gets a variety of high fat, high calorie foods each day.  Not as easy as it sounds.  We occasionally add calorie boosting powder to her foods.  Not often though, since she can sense it’s presence and  refuses to eat whatever food it’s added to…  Oh, and she would also rather have carrot sticks than ice cream, she ate two spoonfuls of corn for dinner tonight and left  her chicken nuggets and mozzarella stick on her plate and will not allow a cookie or cake to pass her lips.  *sigh*

Because getting  her to eat is as hard as getting me to not eat, Emily got a feeding tube placed in her stomach last August.  I NEVER thought that I’d be able to casually mention the fact that my daughter has a feeding  tube permanently placed in her stomach.  Making the decision to have her get it was HELL.  I fought it with  everything I had for two months before realizing, in one, thirty second  revelation that she needed  it.  About  a month ago a new neighbor (someone who did not get  to hear me moan and wail for two months about the pros and cons of the tube) asked how extensive Emily’s medical needs were.  I  described her meds and vest and stuff, but forgot to mention her tube.  That was the moment I realized that CF has become, for the moment, nothing more than  something we simply do every day.  It’s like brushing our teeth or doing the  laundry.  It has to be done, so we do it.

Each night, after Emily goes to  sleep, we fill up a bag, similar to an IV bag with three cans of a  special formula of Pediasure, four scoops of a calorie additive, and three special enzyme capsules.  That bag is hooked up to a pump and attached to the tube that sits in Emily’s tummy permanently.  A few buttons are pushed, and  the  feeding begins.  It continues for about 8 or 9 hours.  Sometimes we have a leak.   Sometimes Emily throws up in the  middle of the night or first thing in the morning.  Usually, Emily wakes up with the biggest,  wettest diaper you can imagine.  Other times she somehow wakes  up dry, walks to the bathroom, sits on the potty and pees an ASTOUNDING amount for  a little girl.  Seriously, it’s incredible. 

And, we do this, every day.  That’s the ins and outs of it.

There is, of course, the  non-tangible.  The emotions.  The fears.  The worry.  Those things are there every day, too.  But, I”m not compelled, anymore to work CF into every conversation.   I can actually talk about other things for a really long time before anything remotely related to CF comes up,  And, when it does, there  is usually a really good reason.  I’ve come a long way from the day when I told the  deli lady in  Piggly Wiggly that Emily had CF simply because she commented that Emily was cute. 

For a long time I imagined the end of Emily’s life almost daily.  I cried each and every day.  I still do sometimes, when I read about a child who died of CF.  When I talk to or read the blog of another CF mom and I realize that I am part of that club, too.  I used to spend hours and hours reading everything I could find online  about CF.  Now, I’m as likely to read a regular mommy-blog as a cf blog.   

There is no way, and not enough time or room in this post to describe all  of the ways that CF has shaped me as a person, or Isabelle as a sister or Daddy.  I could, and  might someday, write an entire blog devoted to the thoughts that  flitter through my mind dozens of times a  day that I wouldn’t have if there were no  cf.  But, for right now, I don’t have to.  Because, CF is in the back seat.  We tend to  it as needed, and it behaves nicely and stays there.  I am all too well aware that this is temporary.  Someday, probably sooner rather than later we’ll have a BIG HAIRY SCARY CF battle on  our hands.  And then  another, and another and another. That’s the  way CF is.

Shortly after Emily was born and diagnosed, a wonderful CF mom who is a member  of a website to which I also belong, told me that eventually we’d find a new normal.  Life would never again be what we were used to, everything would always be different than the way it used to be.  But, she promised, it wouldn’t always be so hard, either.  I wouldn’t wake up every morning feeling like someone else.  We’d find a new way to be ourselves.  A  new normal. 

That’s were we are right now.  Living our lives that have become  normal to us once again.  Waiting for the next mountain that we have  to climb, but, enjoying each day that is simply, normal.

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3 Comments

  1. Tara said,

    I love the premise of your blog. I have to say, I’m hooked. And I do hope you continue after summer is over.

  2. Beverly said,

    You sound like you’ve found a good balance with CF in your lives. Thanks for sharing your thoughts.

  3. Leslie said,

    Thanks for sharing your blog with me! I look forward to reading more! I particularly enjoyed this post… it all hits home with us too!

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