Sunday, June 17, 2012

The Adventures of a Traveling Tubie!

Our family has taken long trips several times before (always by car) but this past trip was the longest drive and the longest stay we've taken since Case became a Tubie. We drove about 10 hours and stayed 7 days in North Carolina  with extended family.  We also stayed in VA on the way down making it a total of 8 days. That means 8 feedbags, 8 Farrell bags, 2 right angle extension tubes (for all his feeds), 1 roll of medical tape (to keep tubes in at night), 8  Mickey-Button pads, 24 cans of Compleat Pediatric, 1 can of DuoCal, 2 empty bottles and caps, medications, syringes to flush and dispense meds, 1 emergency back-up Mic-Key button kit, his feeding pump and a large syringe with a straight angle extension- in case (God forbid) Case's only pump breaks, and we have to wait for a new feeding pump to be overnighted from Pittsburgh. Oh, and his Pumpkin Pack. Oy! That's a lot of stuff! And 95% of it can't be just picked up at Wal Mart if we leave it home.;) So, to answer the infamous question, "How do you travel with a Tubie?". You just do. You set aside an extra day (or two) to pack all his crap and you of course pack your patience, too.
  Vacation came and went. It was wonderful and made me even more thankful for Case's terrific nurses that take great care of him and his feeds, meds, etc. for 8 hours at night. I forgot how tiring that can be. It's amazing how as a mom you just adapt to whatever challenges motherhood may bring. There were lots of stares (NC isn't very "feeding tube aware") and TONS of attention for our adorable Tubie. One large family even stopped and talked to me and Case during a feed. Their cousin's daughter had a feeding tube. It was refreshing for someone to know about feeds.;) Any way, I snapped lots of pictures (just in case you are a visual learner like me) to take you through the Adventure of a Super Tubie!

In case you were wondering this is what all those supplies look like all packed up!

I didn't have anything thing to "prime" (when you pump feed you need to fill the long tube with formula so you aren't pushing air into Case) into so I primed out the window.:)

My back seat helper.:) We run 5 feeds a day for about 45 minute through the pump and one continuous feed for 6 hours at night. So, it felt like a lot of the car ride consisted of measuring, adding Duocal, shaking, priming, feeding and of corse...vomit. He retched and vomited 3 times before we even got to Brezewood (about 50 minutes from our home) on the way to the beach. We stopped at a rest stop in Breezewood so I could clean a vomit covered toddler and his poor, stinky car seat.

And the vomit didn't stop with the car rides. It continued in the hotel and once we got to the beach. Poor guy seems almost used to it by now.

Once we got to the hotel the first thing we did was SWIM! Case only swam for 10 minuted bofre it was time for another feed. So, what did I do? Naturally I hooked him up and his daddy held him at the steps. Being tube fed shouldn't mean missing out on life it's just a different way of living!

We didn't have his IV pole so we fed him with his Pumpkin Pack (the adorable monster bag you see) or without.

I even fed him on the beach! I of corse kept his stoma (the hole in Case's body that the Mic-key is plugged into) clean and sand free.

He ate. We ate.

One night the medicine port came open on his tube  (I forgot to tape it closed) and his feed ended up in his bed. Ew.

Chilling with his oh, so cool crab Tubie Whoobie. They are also on  Facebook.

And that is all for this particular Tubie Adventure. I hope you enjoyed it and remember I am not a doctor just a mom of a tube fed child. I take the advice of some pretty rad doctors and use my maternal instinct when it comes to the medical care of my son. As always, consult your doctor when it come to your tubie's care.:)


  1. I've said it before but you are one of the strongest women I know. We love you guys! We'll need to do another cookout this summer!

  2. Thanks, Vanessa! You are so sweet!! We definitely need to do another cookout.:) We love you guys so much!