Thursday, May 24, 2012

How goes the tube?

I've had a lot of people ask how Aidan is handling the tube, so it's probably time to share how that's been going.

Does he pull his tube out often?
No, not often.  Occasionally, though.  For the most part, he leaves it alone (and so do the other children), but sometimes when the tape is getting really loose, or it's hot and sticky out, or it's 4pm on a Thursday - he pulls it out.  So yes, it happens, but it doesn't rule our lives like we thought it might.

Does he hate being tube fed?
Not at all.  We haven't yet stumbled upon a total volume or rate that he can't handle (granted, we haven't tried especially hard.).  In the morning, when we get up, I always ask him if his belly is full (nods yes) and if he's happy to have such a nice full belly (vigorously nods yes).  I'd say, all in all, he's a happy little monkey.

Does he seem more shy or self-conscious with the tube?
This one is tricky.  Yes and no.  No, in that he doesn't care what he looks like or who sees him.  There is no embarrassment, no shame, and no sadness at looking different.  He is who he is, and he's fine with it.  And really, so are the other kids.  Questions are asked, answers are given, and it's never awkward.  The grown-ups are a different story, but that's another issue for another day.

Where we do run into difficulty is in crowds.  Aidan is much, much more clingy, nervous, and anxious in large or loud crowds when his tube is in.  Gymboree can be too scary, laughing children can seem too loud, and the world can be too much.  It doesn't always happen, but it often does, and all we can do is comfort him and let him experience things at his own pace.

Too much, mama.


Any reactions to the tape?
Aidan has super sensitive skin (we've dealt with some pretty nasty eczema since birth) and we were concerned about how he'd react to the various dressing retention tapes (we use Duoderm, Tegaderm, and a variety of medical tapes).  For the most part, he does fine, although if we leave the tape on too long (5-7 days), he gets a pretty funky rash.  Definitely good incentive to change that duoderm more often!

Is something burning...?

Please, never hesitate to ask questions if you have them.  We're only too happy to share our journey.

20 comments:

  1. I'm glad he's having a better time with it. Good luck with the G tube!

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  2. I'm so glad to know he is handling it well. Having a nice full belly is a nice feeling for him, I'm sure. I always like my belly full! He is so sweet and adorable.

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    1. thank you, Heather :) I can't manage to be too happy with an empty tummy, myself :)

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  3. He handles it like a champ but of course he would...that's our boy.

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    1. and I hear those jammies make him look like Ziggy Stardust...

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  4. It helps that he has such a wonderful mommy to make sure his tubie works just fine. :)

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  5. What a cutie you've got on your hands! You guys are doing such a great job with him - he is lucky to have such devoted parents. :)

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  6. The kids are awesome with it, and he's still the same silly boy...i was with him for a couple days last week and he still loves a good ticklefest <3

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    1. He's a character, all right. you can't get this kid down!

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  7. It 's amazing how resilient kids can be. They get through things with a smile on their cute face... things that most adults wouldn't be able to handle. I'm glad that other children are receptive to it. When our little man had to wear a cranial band I found that to also be the case. Kids are blunt, but give them the honest answer and it's like, "Okay, cool" and they are off. I definitely agree with you, adults are a whole other story!!

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    1. That always warms my heart. Kids are curious, but once their questions are answered, they get on with life. No judgment.

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  8. I love that he can tell you when his tummy is full! So cute. I'm wondering how you know if the tube is going in the right way. How do you know if it's in his tummy (and not his lungs?)? And how to you know how far it needs to go in. Just curious! I'm glad he does so well with it. I think a lot of the issue with grown-ups is that we are too shy to ask and to quick to assume the worst.

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    1. Great questions, Carrie! Before we pump anything in, ever, we withdraw some liquid from the tube with a syringe and test the pH. Certain pH's indicate that we're in the stomach, while others are indicative of being elsewhere (like the lungs).

      There are diagrams online regarding how to measure, but basically you use his body to help measure (externally) how deep the tube needs to go, then mark the spot with a sharpie that should rest right outside his nose once it's fully inserted.

      It sounds a little daunting, but it really isn't that hard. :)

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  9. So glad to hear that he is doing well! We all like to be full, and Aidan definitely isn't any different. Props once again to you and Tom and ALL of your helpers for doing such an amazing job with him!!! And also to Aidan for being such a cooperative little guy :)

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    1. Thanks for the support, Jenn. We're really looking forward to being done with this whole thing.

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  10. What a journey for you guys. You're all very brave and you're such a good advocate for your boy. I have a ? Though. Why call kids with tubes 'tubies'? I've seen this several places and it seems to have the opposite effect that a parent of a child with a tube would want - it defines the child by how he/she eats and focuses solely on the tube. Just curious. Best of luck with Aiden's health.

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    1. That's a great question. Obviously, I can only speak for us, but the calling him a tubie is (to me) a celebration of what he's overcoming. Additionally, I want this to be something he's proud of, not something he feels he needs to hide.

      I do see your point though, and it would probably be a good idea for me not to assume that other tube-fed children like to be called tubies without asking :)

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