Sunday, June 24, 2012

Our 30 Hour Feeding Tube Experiment

There are a few facts I have been floating around in my brain lately:
  • Mr. Boy has the ability to eat... he can and does swallow food from time to time. 
  • Mr. Boy likes to play with food and is not averse. 
  • The issue that necessitated the feeding tube, all day-long vomiting, is no longer an issue.
  • Mr. Boy does not eat because he is not hungry and does not realize food's purpose. 
  • Mr. Boy chokes a lot while trying to eat and the Drs mentioned this was probably because of the feeding tube in the back of the throat
These facts have led me to the following assumptions
  • If we take the tube out, Mr. Boy shouldn't struggle with choking while eating as much.
  • If we stop the feedings through the tube, Mr Boy should get hungry and eat.                                 Problem solved right?!

I've been thinking about these things more than ever with the fast approaching option of surgery to insert a feeding tube port in Mr. Boy's abdomen. During our last Gastrointestinal visit, I told our dr how Mr. Boy has been doing and that he was eating some foods and no longer vomiting. After saying this, the Dr said, "Well then it looks like Mr. boy will be off the tube in a year or a few years." Bleh. I know this is the norm and the typical procedure to take it painstakingly slow, but I still feel like I'm punched in the stomach when I hear it out loud. 

I was wrestling with all these thoughts on Thursday, when I left Mr. Boy alone for a moment in the living room without putting his feeding pump backpack on his back. Mr. Boy started crawling to me in the kitchen and usually when he does this, he will eventually get to the end of his tube which pull on his shirt where I put extra tape so it does not pull on his face, and it stops him in his tracks, where he will yell for me to come help him. This time the tape on his shirt failed and the aging tape on his face ripped off, sending the tube flying out of his stomach and nose. The poor babe was in shock and as I tried to console him and felt horrible for not changing his face tape as I knew I should have that morning, I felt the tingle of excitement, thinking, "now's my chance to try my experiment... maybe this will be it!"

All Thursday afternoon I happily offered Mr. Boy all kinds of foods. He actually ate the most food he has at any other time in one day. It was still nowhere near what a kid his age should be eating, but it was a start, and a good one at that, I thought. My excitement was through the roof, Thursday night, knowing that all night long Mr. Boy is usually being fed through the tube, but that night his tummy would rumble and he would awake to a feast. Mr. Boy would eat and all would be right in the world! I could just see my smug look as I told our therapists and Dr just how clever, wise, and insightful I was to try this. :) Well, Friday Mr. Boy was hungry alright, but this made him irritable and not knowing that food is the "cure" to the hungry feeling, just made him mad. He refused any nourishing drinks and almost all the different kinds of foods I offered him and only chugged water all day. I offered him anything and everything I could think of: I danced around in front of his highchair, sang, played music, took him to watch his cousin eat, tried eating in front of the tv, and all to no avail. He angrily pushed it all away. Alas, we decided we'd better put the tube back in that evening and did so. 

After sobbing a bit Friday, David helped me realize it's ok.  It was a good trial run and in one month when it is time to change Mr. Boy's tube to the other nostril, we will leave it out again, re-trying each month till we need the tube no longer or till he has the surgery. I'll update next month when we try again! We are praying that Mr. BOy will start eating and leave the feeding tube in the dust, but even if he has the tube for several more years, we are blessed. It is making him grow healthy and strong. Yes, it is inconvenient, I loath it at times, and it's not fun for Mr. Boy's face or fun for him when he wears the backpack with the pump in it, but it really is nothing in the scheme of things and honestly could be much, much worse. So here three more pics to reward you for reading through that long post. Good job!


  1. David and Kassy...thank you for this update...I know how to be praying for you and Asher. Your journal is so poignant and tender. Blessings to you as you journey through these challenges.

  2. We will be praying for Asher to be able to wean off the feeding tube. Looking forward to the next update!