Wednesday, January 2, 2019

That Feeding Tube Life

 Greetings from the between land of the holiday break after the holidays have passed.  This grey area is where the greatest of naps and movie binges flourish.  Our plans of eating, napping, painting, reading and working out were decimated when we discovered that Liberty had pulled her tube out sometime in the previous four hours.  She pulled it out.  Out. Leaving an opening straight into her stomach.  

We made it just shy of six weeks with the original tube. 

   First, know that I am not squeamish, but the sight of her feeding tube hole without the tube was unsettling- to say the least.  
   Second, didn’t really know who to call first. 
   Third, my need to cry and gag simultaneously was only overpowered by the sheer will to not puke on my kid. 
    Fourth,  trying to follow the surgeon’s advice and insert a straw into the hole to keep it open was not successful.  It just wasn’t.  Will be getting some smaller straws to keep just in case.  
    Fifth, realizing that there may not be enough tape on earth for me to feel confident that the F-ing tube stays in place is real.

     I had decided  to keep track of the many places I would be feeding Libby by taking a picture of each location.  My belief that this tube would not hinder our many activities remains solid; I’ll be much more aware of the downside of feeding tube life.   There are so many more things we want to do and continue to be a part of .  

     Here are some of the pics I’ve captured in the last six weeks.  

Restroom at Street Toyota whole the van was getting serviced. 
Pain doc repeat

Feeding after a swim. 

...Snack Shak

...Ronald McDonald house

...in the van.

...High Plains Food Bank

And in my classroom.  

We’re currently discussing names for this wonderful tube that has so much power over our lives.   Some of the current faves are:
Tubi Wan Kinobi
Freddie Tubar
F-ing Tube
Feel free to add your own ideas.  

 Now we’re going back to the land of grey bliss to breathe and cherish these last few days. Thank you all for your prayers and laughter as we traverse this tubular life.