It’s been a while since I posted again, but I wanted to pass along a website that I really like. “You Start With a Tube” is the website of Eric Aadhaar, who passed away this past summer. He ate through his g-tube due to some complex health issues, and this website is an amalgamation of his learning through personal experience, other people’s stories and research.
What I really like about it is the wide range of topics he discusses… from types of tubes, to making a homemade blended meal… to unclogging tubes. His learning journey seems very similar to my own, except that he is experiencing things first hand, while I am learning through Henry.
This is always what really attracts me to his writing… his personal observations. For all my hands-on involvement, I have no idea what it is really like to eat with a g-tube. I really have no idea what Henry experiences when the food is going into his tummy, or when the pump starts and stops, or when we change his tube. He is now telling up more about it, and as his language skills develop I expect we’ll hear more and more about what it feels like… but it’s not the same. So hearing another adult describe the feelings – both physical and emotional – it brings me one step closer to what my little guys experiences. For this alone, the website is priceless.
Beyond this, it also presents some great information about tube feeding in general, and making homemade blended foods in particular. For a person new to this area, it would be a great resource to start with.