Saturday, February 21, 2015

G Tubes, Oral Aversions, and Feeding Pumps, Oh My!

I am a week late! Feeding Tube Awareness Week ended last Saturday, but I say, better late than never!  I've explained all about Colin's trach and why it's needed, but I haven't really talked about his G-Tube at all!

Here is Colin showcasing his G-Tube

First off, I'll explain why this was needed.  If you've seen pictures of Colin when he was still inpatient, you would see a tube in his nose called an NG tube, shown here:

This would attach to his feed, so if he didn't want to eat orally, then his feed would go in through this tube directly into his stomach.  Colin obviously could not take any food orally while he was intubated, so all of his food would go through that tube.  Once Colin got his trach, was started feeding him orally.  He actually seemed really excited the very first time we attempted to feed him.  It turned out that he was aspirating his food, meaning that he would breath in some of his food and it was going into his lungs making him sick.  The doctors had to do a swallow study to see if thickening his food would work, which it did.  So we had therapists that would come to his room at the hospital in Pittsburgh who would work with Colin and me during his feeds.  Sometimes he would do great with a bottle and sometimes he wouldn't.  

As we continued to work on feeds when we transferred to Nationwide Children's, he became less and less interested in taking a bottle.  He did, however, do a good job nursing, but I was not producing enough for him to nurse exclusively, so down the tube supplemental milk would go.  As the time for him to come home seemed to be getting closer and closer, Colin started deciding not to eat from a bottle as much and would refuse to nurse at times as well.  I talked to people I really trusted at the hospital and they all agreed that Colin would need a G-Tube (or Gastrostomy Tube).  So, we scheduled the surgery, much to my disappointment, as I was really hoping that Colin would eat well.  However, Colin needed the feeding tube.  The Occupational Therapist that we saw in the NICU and now see at clinic on occasion basically told us that Colin would starve to death before drinking a bottle.  He just doesn't understand that eating nourishes his body, fills his belly, and is necessary for survival.  

Ok, so here is what a G-Tube looks like:

This G-Tube in particular is called a MIC-KEY button, which is much smaller than what he had originally, the Peg tube.  There is a smaller tube called a Mini button, which I would love for Colin to get.  We stick this into the hole that is in Colin's belly and inflate a balloon so that it stays in, here's what it looks like inflated:

The balloon is filled with water, we change this every 3 months.  Of course, we have to wait until his belly is empty, or else all of his food would come out of the hole when we took the g-tube out!  In order to feed Colin through the g-tube we use an extension, seen in the picture below:

We insert the extension into the g-tube and connect the g-tube to his feed, which uses a pump to push his food in.  Lots of kids can handle bolus feeds where, using a large syringe, people can use gravity for the feed to go in.  Since Colin has emesis (or vomiting) issues, we put his feed over 45 minutes on the pump.  

The g-tube has come out accidentally (3 times to be exact), it's designed to come out if forced so that there would be no damage to his stomach.  We're only humans, and we make mistakes.  It is very scary though.  If the g-tube comes out and we are unaware, the hole in his stomach could close on it's own in as little as 30 minutes!  Yikes.  It is very low maintenance, however.  We clean it, but it is not a sterile opening like the trach.

So, that about covers it!  We hope and pray that Colin will continue to improve on his oral feedings and will be able to have the tube removed.  We take it day by day, but we've made huge strides since coming home.  Here he is after a great feed: