12 July 2011

CF Travel Fail

Um, this isn't what a mom of a Cystic Fibrosis child wants to hear from her spouse 45 minutes into a 2 hour drive to the airport with not even a minute to spare before the plane leaves...

Gasp.  "You know what we forgot???"
My heart sinks, "what?"
"The VEST!"

Uh.oh.  A week.  With No Vest.  No Chest Physical Therapy isn't even an option.  Turn around and miss the flight?  Keep going and try to figure it out as we go?

We surmised that surely we could work it out.  It's only a week at Nana and Papas.  We know manual CPT and all.  I suggested we just see if we could find a Respiratory Therapist who could sell us some right-sized percussor cups for us to do.  So, did we turn around?  Nope. 

I thought, "We did CPT for the first 10 months of Bennett's life, we can do it again, right?  Lots of people don't have The Vest.  This won't be that big of a deal, right?"

Wrong.  Who was I kidding?!  This is horrible.  We should have turned around and picked up The Vest that very instant.  Asking a nearly two year old to sit still while I beat on his back and chest for 20 minutes twice daily is painful (well, for us - not for him)!  If he didn't sit well enough for the vest, he surely ain't sitting still for us to "clap" his back.

We should have turned around, especially in light of the fact that we arrived at the airport with less than 40 minutes before our flight boarded and therefore lost the opportunity to check our luggage, causing us to miss our flight afterall.

Thankfully, the airline was able to get us on the next flight (which was a really wonderful flight and provided us wonderful seats).  But, our night didn't end there.  It was my gasp that disturbed the peace tonight next:

Gasp.  You know what we forgot!?!?
Bennett's Duocal (the med that fattens up Bennett's oral feeds)
Darn.  Can't pick that up at Kroger.

Oh well.  The fact that we got all his medications (all 7 of them), all of his feeding supplies (scale, DVD player, paperwork, Magic Bullet, toys, bowls, lids and spoons), all of his tube supplies (pump, feeding bag, formula) and all of his his nebulizer stuff (nebulizer, Albuterol, masks, microwavable bags), I'd say "small" things like forgetting The Vest and Duocal are just pars for the course.  90/10 record ain't so bad.

Despite the enormous effort to move Bennett's structured feedings to a new location, we are so glad to enjoy our prearranged vacation with Nana and Papa this summer.  For all the work it was to bring this stuff and to do it here, it is every bit worth it for us to see Brian's family. 

Let's just hope we don't find something else we left behind along the way!!


  1. Oh goodness, I can't even imagine trying to pack up all Bennett's stuff. I manage to forget things when it's just myself (left my B-berry cord at the hospital yesterday ;) Hope it's a good trip!

  2. I just love this post because CF mamas can TOTALLY relate. No one can understand all the "stuff" we HAVE to remember unless you have to pack it up all the time. Hope you can relax some and enjoy your time there! Good luck with those pats....I can relate ;)

  3. Phew. I have to pack a lot of extras because of allergies but nothing like that! My hats off to you!

  4. I've heard people recommend shipping some luggage by UPS, to avoid having to check as many bags (extra baggage fees) and worrying about getting slowed up at security. Some things you obviously still have to carry with you, but for things you don't need right away (or have extras of), 2-day shipping might save a little stress on the day you're traveling. Aaron does this with his bike and bike equipment when he travels. He ships it to his sister ahead of time, and it's waiting for him when he gets there. Then he ships it home the day before he leaves.


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