Tuesday, February 9, 2016

Feeding Tube Awareness Week - Day 3

We went out of town for my younger son's birthday this past weekend. We liked the cabin we stayed in so much, we asked the office if we could get an extra day. Since no one was coming in Sunday night, they were happy to oblige. It was great to have that extra day of rest and relaxation.

Now it's back to life as usual (which is wonderful) and back to feeding tube awareness.
Yep, today we are going to talk about reasons why kids have tubes. Let me start with the simple information first. You can't tell by looking at a child if they need a feeding tube. There is no sign on their forehead that blinks all their medical issues. So, if you were thinking of a comment that starts with "but he looks so normal" or "he looks so healthy", just go ahead and stop right there and keep that thought to yourself. The parents won't take you seriously, they will understand you don't want to get it, and their shields will go up. If you want to really grasp the situation, ask good quality questions. Also, remember, only ask those questions if you have a right to know the answers. Don't ask a random stranger in a grocery store. Their child's medical information is not your business.

Feeding Tube Awareness has developed a wonderful list of conditions, diseases, and disorders that often come hand-in-hand with a feeding tube (or at least they are very common with those diagnoses).

You can check that list out here:

Condition List - Feeding Tube Awareness

Now, I am going to get more personal. I am going to share our son's reason for needing a feeding tube. This is the diagnosis he received after years of testing, scopes, biopsies, feeding therapies, labs, and doctor visits with specialists. It took a lot of trained eyes on him to figure this out and it was exhausting.

Ready for it?

Idon'tknowthisisnewtome disease.

Yep sometimes you have a kid with a feeding tube and the doctors don't understand the mechanism of why they can't eat enough to sustain their bodies. Oh, they have medical issues. Our son HAS medical issues. None should cause him to not be able to eat and fully process his food. His tube was put in because, no matter how hard they tried to figure it out, he was failing and the point was to get him healthy and make him thrive. There comes a point that you need to start treatment even before you figure out why you need the treatment. His labs show issues. His feeding therapists can't figure it out but see the issues. His doctors can see that he can't do it. They just don't know why.

Society doesn't like that. We like names for everything, especially anything medical. But, when you live in the medical world, you quickly realize how much we don't know. I wanted to bang my head into the wall every time a doctor said "I don't know" because I knew they honestly wanted to know but didn't.

Here we are, 16 months later, and our son is doing so much better. He looks healthy BECAUSE of the tube. We are blessed to have it in our lives. I never wanted it. I fought against it. But, in the end, the doctors were right and he is healthier now. It wasn't the easy way, it wasn't giving up. It allowed his body to be healthy so we could actually work harder to get his body to do what it needs to do on it's own. A sick body can't heal many times simply because it's too sick.


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