Here is our Super Tubie!! In honor of Feeding Tube Awareness week I thought I should share a picture of our super tubie. This has come about thanks to the website www.feedingtubeawareness.com This site has a lot of useful information about feeding tubes and has a great tab for families and friends to read. This tab does a great job of explaining the challenges of life with a feeding tube. I am thankful to say that we cannot relate to all of it, but some of really hit home. One example is having to have a very structured daily schedule, making some things very difficult to do. We try to keep our tubie sheltered from getting sick, because it usually takes him longer to get over things and we usually have a little weight loss if he gets sick. Having a night drip is very difficult, we get up every single night at 2:00am to disconnect his feeding. The list could go on, but there is no need to dwell on that.
One thing I can say at this point is we are very thankful for his feeding tube. Given everything it has given Keegan a better quality of life and allowed him the nutrition to grow and develop. We know one day he will realize that eating does not have to be painful and it might even be enjoyable, but until then we can make sure he gets the nutrients and medications he needs. One more thing I can say is that a feeding tube does not define Keegan, it is just one little part of him. I am hopeful that we can spread the knowledge of feeding tubes so people can realize that they are nothing to be afraid of, but just a way for some to get their nutrition.
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