Feed

We have made it through another busy and somewhat hectic October. I love fall and the changes it brings all around me, but the grueling pace we set at the beginning of a school year often becomes a prize fight during this month.  The sheer amount of wonderful opportunities we’ve had to be with loved ones, work towards our goals,  serve our community, and kick the booty of our never ending to-do lists is astounding.   And we did it. November welcomed us in a surprising way. 

For the last year Liberty has been steadily losing weight. We have altered her diet, moved to soft foods, increased the thickness and calories of her liquids, and chosen to pulverize every meal she gets.  The amount of calories we can get into her body is not enough.   Her spasticity and the dystonia storms cause her to burn through whatever calories we can get in.  

This  battle is waged against a jaw and throat that has been attacked by Parkinson’s.   I call it her Parkinson’s swallow; doctors call it dysphagia.  Libby can’t tell how much she’s chewed what’s been placed in her mouth.  She will chew air like a boss, and then swallow another piece with any chewing- luckily her food is all mush.  Each meal wears her out.  Then add to that her lack of desire to eat at all and you get a battle for every meal.  Every single meal is a fight.  It’s ugly. I’m not the mom I’m supposed to be during meals.    

Several of our docs have brought up the feeding tube over the past years, and I’ve discounted getting this invasive procedure as she was still eating.  Since August Libby is down around 15 pounds.   15 pounds that she didn’t have to lose.  She’s under 100.  To me, this is emergency level.   

I got her an appointment with the local doc, told him what we believe she needs and he did order the swallow study That was completed two weeks ago. Since then we’ve played some Olympic level phone tag with several doctors and got to meet a pain management doctor who is lovely. 

Thursday I received a confirmation call for Libby to have the gastric tube placed Friday, 11/2, at 6am.  We were there. Did all the stuff.  They took her back. Less than an hour later a new doc came back with mixed news.  

Libby’s bowels were inflamed and her liver was in the way.  Partially because of her somewhat contorted body due to dystonia.  Her back is shifted so then is her torso. The doctor suggested that we reschedule and do the same placement procedure with a CAT scan for guidance.  That means we lost a day as did our family members who were there on such short notice.   I would rather be safe, but was still saddened by the loss of opportunity to get the nutrients into her body.   I’m telling myself that this was a training run.  Just a little practice.  

So, we’ll schedule again.    Praying it will be soon.   

The irony here is that we feed people.  Lots of people.   It’s natural for me.  There’s a reason that I serve through Snack Shak, High Plains Food Bank, Snack Pak and Key Club’s efforts to honor the campus; I believe in the beauty that happens when food is shared.   Yes, while I’m feeding so many others, my Liberty is diminishing everyday.   It’s a sad irony.     Praying we can get into an operating space soon.   

Much love to all.

Ileana