Friday, June 15, 2012

L and his feeding tube

L has a Mic-key GJ Tube (a tube that bypasses his stomach) that provides all his nutrition because he will not/cannot eat enough to keep himself alive. L didn't get his tube until he was 16 months old and we had tried everything we could and followed every advice we could to try to get him to eat and gain weight. Getting his feeding tube was something we knew had to be done but we waited until we had exhausted every other idea before we consented. He started with a Gastric Tube (GT) that put formula into his stomach. He couldn't keep the formula down and was tiny because he couldn't gain weight so we switched to the tube that bypassed his stomach. He started gaining weight and became a happier healthier boy! This is the short side of the story.

We struggled with his eating, weight gain, reflux, vomiting, and many other things until he was almost 2 years old. He will have had his GJ Tube a year in August and even though life is easier, we still have our struggles. L still won't eat and only drinks about 1-2 ounces of fluid (usually water) on a good day. He is in therapy at his daycare and S L O W L Y takes little steps toward our goal of getting rid of his feeding tube. We are about to do one of the last tests to check him for something that may be causing his swallowing problems. After that we are going to really push eating and drinking and maybe do an intensive feeding program. I will say that one thing hubby and I both agree on is that if L has to be tube fed his whole life, we are okay with that. He is a miracle little boy who has an amazing story of God's healing in his life. With all that "could have been" we are so thankful that this is his only major lingering issue. There is so much more that I could write about but it would take months to get it all down!

There are many things that hubby and I want to use this blog for: sharing our thoughts, saving you money, sharing yummy recipes, and technical stuff I have no clue about! I also want to talk about what we go through with a son with a feeding tube. There are very few resources/information for children with feeding tubes and we want to share what we find. The more people that talk about it, the more attention it will receive, and more resources will become available! Even if you don't have a child with a feeding tube, chances are you will run into someone who does or a friend of a friend will surface that could use information. I hope that we can become a place where people can turn to for information!



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