Friday, February 13, 2015

Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 
"Cohen, do you want me to unplug you?" 
He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 
In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window"

For more information on feeding tubes visit our friends at Feeding Tube Awareness Picture

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.
Together we are teaching the world the true beauty of 
feeding tubes!
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