A Tribute to Food (Even if You Eat it a Little Differently)

Logo for the Feeding Tube Awareness Week borrowed from the Feeding Tube Awareness Foundation - http://www.feedingtubeawareness.org/

Shortly after Elise began chemotherapy treatment back in 2009 she stopped eating. We understood she had cancer, but she stopped eating. Shouldn't they be doing something about that?!?!?!? After a few days of not much action in the food department they basically said, "Seeing her eat will make you feel better, but it isn't going to do anything for her right now." I don't think it clicked quite that quickly for me, but I began to realize that eating, as we generally did it in my family, was done because it was meal time or because it was available. It didn't really have much to do with "needing" it.

Off and on in the early part of treatment Elise continued to eat some things by mouth until eventually she just stopped eating all together. We, and the doctors, assumed she would likely begin to eat again after chemo was finished and life got back to "normal". During really tough medical items Elise got her nutrition by IV and later by an NG tube that was inserted through her nose. It wasn't fun watching her go through every day with that tube hanging out of her nose. It was even less fun putting it back in when she yanked it out or it got caught on something! About 2 months after treatment ended, Elise was not willing to keep the NG tube in anymore and she wasn't eating enough to sustain the life of a baby bird. The decision was made to take her in to have "G Tube" placed that would become a way to sustain life for her until she was able to do it more on her own.

That was more than 2 years ago now, and there really is no end in sight. It appears this will be a way of life for us. We have grown accustomed to it and those needs don't often get in the way of whatever we are doing. Elise has the ability to eat, she just doesn't appear to have the desire. She has been run through the gambit of tests. All of the mechanics of eating work fine, but the seizures seem to get in the way and keep her from being able to eat. She has gone through periods when she has shown great eating promise, but they have generally been short lived.

We have mostly grown past the part of being bothered that you can see a huge bump on the top of her belly where the tube comes out. We are used to telling wait staff at restaurants that she won't need anything to eat or drink and watching the strange faces they make as well. As I have mentioned before, Elise is a daily puker. One of the positives of her mainly consuming milkshake like nutrition is that the puke is easier to clean up. No chunks of pizza, spaghetti, carrots, corn, you name it. Just milkshake.............. Everywhere!

There have not been a huge number, but it has been interesting the people that have come up to us in various places and talked with us about their child having a feeding tube many years ago, or even now. The reasons range from disease, to physical development issues, to you name it. Who knew there were so many people out there that depend on a feeding tube to sustain their daily lives. Prior to our experience, I thought this only happened in hospitals.

At one point I thought, "I need to lose weight, maybe I will go on the Elise diet." But, one taste of that stuff and I went back to my lunch. I will leave that kind of nutrition to those that have it pumped straight to their stomach and forgo the taste. I'll work on my diet another way.