I am feeling raw, vulnerable, and probably a little sad. Today, I shared with Tricia and Cliff that I think the time is quickly approaching when I will have to consider a feeding tube. When I was first diagnosed and researching ALS, I thought there is no way I am ever going to consider all the processes, procedures and equipment needed to just barely keep me alive.
According to Wikipedia (Do you like my source? I don’t want to give this subject anymore credence than it deserves):
“A feeding tube is a medical device used to provide nutrition to patients who cannot obtain nutrition by mouth, are unable to swallow safely, or need nutritional supplementation. The state of being fed by a feeding tube is called gavage, enteral feeding or tube feeding. A gastric feeding tube (G-tube or “button”) is a tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition.”
Think about it, at night I wear a breathing mask; six weeks ago, I added the catheter with the tube coming out my abdomen which pours urine into a bag; adding a feeding tube would mean I would have a third tube attached to my body.
I think even Zombies would pass me by.
My mind was made up until I met a woman in our ALS support group who has a feeding tube. She is an “out and about” person who is doing well with the tube with few complications. Her life is an encouragement to me.
So, for the past few months I have been open to the idea of having the feeding tube. However, I am wavering again towards not having it. I am not positive what happens if I don’t. I can guess that no food means no nutrition, no body functions. I would take this to mean a more rapid decline.
Here is the clincher. There is a small window of time during which the procedure can be done. My breathing rate must be strong enough to sustain the surgery. I can go through the process and chose not to use the tube, but when my breathing becomes more labored I cannot go back and have the surgery.
This is just one of the decisions ahead of me. I have read very little about the feeding tube, intubation or the ventilator, I don’t like any of those ideas.
As I write this, I am not trying to sound grim or dismal. This is just the way it is. This is life.
God promises me life, not death. I have a lot to look forward to. Do you?
–Susan