Years ago after my stroke, my feeding tube literally fell out. After much deliberation, I decided NOT to replace it. With all that I had going on medically, I felt like I had bigger fish to fry physically. I wanted a little more quality of life. Even if it meant, I would get very sick. Eating and drinking were a major source of pleasure for me. The doctors suggested I eat and drink nothing but water or ice chips. Water could be absorbed into my body. I just wanted simple things. Like coffee.
Before the tube fell out, I worked intensely on my swallow with a speech therapist. I wanted to eat in the worst way. When the tube fell out, I had my chance to finally eat and drink using all my new swallowing precautions. My doctor gave me a thumbs up if I ran my soft food through a ‘Ninja Food Processor’ before I ate it. It worked. Little by little, time went by and I got braver with my food choices. Luckily, years went by without a problem.
Just recently, I was told by my visiting physical therapist that I was a ‘frequent flyer’ in their home health care program. I didn’t realize how often I’ve been in the hospital lately. (Oh, the memory of a stroke survivor.) When I go into the hospital, my physical progress regresses. Often, I need to be prescribed home healthcare. It helps get me back into shape to where I was before the hospital stay.
Because of the intubation during the stroke, I silently aspirate. Food goes down the ‘wrong’ way into my lungs, but I do not cough or choke. Hence, the name silent aspiration. I am sure you know the feeling. It’s happening when you feel like food has gone down the wrong way and you choke. With silent aspiration, there is no reaction. Unfortunately, this is what I do. Because of the it, I often get aspiration pneumonia. I’ve been told that I can die this way if I keep this up.
One of the ways to deal with this dilemma is to skip swallowing food or drink altogether. This means another feeding tube for Noelle. I look back and realize the bigger fish to fry have been fried. Maybe now it’s time to deal with this situation. I feel like I am very fortunate and blessed that I’ve had a reprieve for several years on this dilemma. I eaten more than my share of chocolate, cookies, brownie mix and cakes. Enough for me to say I paid the piper in full.
The bright side of a feeding tube is I don’t have to worry about what’s for dinner, and I get to lose weight. The negative side is I don’t get to eat or partake in all the yummy goodness that is all around me. That delicious aroma is something to be ignored not embraced because the food is not coming. In a society where most of our gatherings are around or about food, this is difficult place to find yourself.
I know the aspiration pneumonia has caused damage to my lungs. I see it and read about it with every x-ray or CT scan. But I do not regret the quality of life it brought myself with my daughter. For the past few years, we have had an apartment together and in it our daily modified soft meals with my thickened liquids.
Because of my physical deficits, my daughter prepared the meals. Time in the kitchen turned out to be part of our bonding time. Teaching her how to cook, coaching over her shoulder, teaching what little baking I knew, all became part of our connection. It truly was God sent. And did I mention snacks? There have been so many memories with snacks. There is a drawer where I hide my most coveted treats.
As our apartment time is over and she is headed off to a new school out of the area, it is time for reflection. We have had so much fun with ‘our’ apartment. It did so many things in my life. The quality of life I sought, far exceeded my expectations during this time. But now as we disband the apartment, it is time to come back to reality and focus on my physical issues. At my last doctor visit, the feeding tube was recommended to avoid the bouts of aspiration pneumonia. Ironic timing, huh?
I thank God for this time that I enjoyed the quality of life without my feeding tube. I am at a stage now where I can face this issue head on. But I was given years and an apartment stay of a reprieve from the feeding tube. I don’t pretend to know why, I am just so grateful this time took place. It made amazing memories for the both of us. Hopefully, these are something my daughter takes with her and also in her heart. Being free from the tube was much more than me just eating. It gave us a mother/daughter bonding time in my very limited world.
Those with disabilities approach this world in a different way. Their way. I pray that my way of approaching this world (and the kitchen) has taught something to my daughter. Taco Tuesdays, Sushi Wednesday and our homemade truffle pizza (to name a few) all must add up to something she takes away from here. None of these things would have happened if I had the feeding tube. It would’ve been a different journey. I am so grateful for the one that we’ve lived. And so grateful my daughter is such a whiz at making a thickened fruit-punch flavored water. God really knows what He’s doing.
