Monday, February 6, 2017

Feeding Tube Awareness Week 2017

Today is the first day of Feeding Tube Awareness Week. So, here I am making you aware.

For those that don't know us very well, or are new to our family, we have two sons with feeding tubes. They weren't born with feeding issues, those came much later.

I will be sharing our stories of how we got here throughout the week. But I would like to answer a few questions up front.

  1.  No, we don't know why our sons don't feel hunger. After more tests than I can count over the last 5 years, our GI had the closest answer of "probably a genetic issue, but medical science most likely doesn't have the answer yet." So, that's what I tell doctors when they ask. No one has ever argued that it wasn't possible that they didn't know.
  2. No, you can't see their tubes. Neither of them is embarrassed by them but neither wants to lift up their shirts to show them to you. Please don't stare trying to see the bumps in their shirt, they know what you are doing. Asking is like me asking you to lift your shirt to show me your belly button as an adult. Just no.
  3. Yes, we tried what you just suggested. We tried junk food. We tried no junk food. We tried airplanes with spoons. We tried stern, we tried funny, we tried loving and gentle. We did feeding therapy. Guess what? They are graduates of feeding therapy. There is no therapy for "doesn't feel the sense of hunger". Yes, we have tried ice cream. We have tried it. So, unless you want me to die a thousand deaths, don't suggest it. (that is unless you have a kid like ours and have a true answer)
  4. No, if we leave them with you for a week they won't eat.
  5. Yes, they will starve themselves.
  6. No, this isn't so wonderful because we can get veggies in. Our oldest son would be a vegetarian if we let him. Veggies were never an issue.
  7. Yes, they do look fairly healthy. That's BECAUSE of their feeding tubes. You should have seen what they used to look like. You would not have said the same thing a few years ago.
  8. We have no clue when they will get them out. Yes, it might be never. So far we see no end in sight. They must eat 100% of everything they need to survive and thrive, take all meds, and all hydration by mouth for a minimum of 6 months, without one single slip up, in order for the doctors to consider removing them. We are no where near that at all.
  9. No, I don't mind you asking me questions about them as long as they are honest questions, not passive aggressive judgement disguised as questions. I love to help people understand.
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