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Forum: Children with Special Needs


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May 24th, 2009, 02:20 PM
Dacontay4's Avatar Mega Super Mommy
Join Date: Jan 2009
Location: WI
Posts: 2,218
I'm hoping for some adivce. Grier has a feeding tube and an ileostomy, and I cannot keep her hands away from them. The feeding tube is more of a problem then the ostomy. I wrap an ace bandage around and dress her in one pieces...she really starting to get her strength back and she's strong! Every time we undress her, for a bath, to change her pouch, to feed her through the tube, whatever, her hands shoot straight for one or the other. We've already had to take her in twice because she pulled out her feeding tube completely, and I'm afraid she's going to rip it out so violently she'll hurt herself. It's a team effort...one of us holding her hands and the other changing the pouch or feeding her. She's FAST, and I don't know how to get her to STOP going after it! Today she managed to rip off her pouch before we woke up and there was stool everywhere. Any ideas?
Wife to David
Mommy to Mady, Connor, Taylor, Grier, Chandler, Evalyn, Bryce and Jude
2 sweet angels born straight into Jesus' arms:
Mason Charles (1/3/05) and Kaydence Faith (4/30/10)

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May 24th, 2009, 04:12 PM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
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I really wish I had some advice, but I'm having my own "hands off" issues with Ava. Her chest is raw from pulling wires off. She won't leave tubes in her nose, no matter how much tape we use. ((Hugs)) I'm going to see what our other moms say!

Thank you, tasha_mae, for my siggy!
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May 25th, 2009, 08:49 AM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
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We do the same with Milo's feeding tube-wrap the bandage around him at night. When we chnage him or have to do anything else that requires him to be naked, we try to give him something else FIRST to keep him occupied. We try a bottle or something to put in his mouth, but he doesn't eat much, so that doesn't always work. We give him a toy for each hand-toys that we save specifically for those times so that he's not already bored with them, OR "naughty" toys, things that he's not supposed to have. Our camera, floss, medical equipment, whatever gets his attention!

We try to let Milo have plenty of naked time because he sweats A TON, even when he's not hot, so we have to make sure to do the same thing at those times, or use the bandage, or cover him with a blanket...he'll usually play with the blanket and forget about the tube.

He pulls his oxygen out a lot, so we do some of the same things-try to occupy him otherwise, or (and I hate this) we restrain him at night. They're just little velcro things to wrap around elbows (but he's so small that they cover his whole arm) to keep them from bending. His face is always so raw from pulling the tape off!

Oh, and she most likely won't hurt anything, really, pulling the tubes out. Milo did a "crunch" one day and popped his out. He's also pulled it out a couple of times, one time REALLY hard-and it did nothing. Once they heal, they're like earring holes, so pretty resilient. (And with no way to rip THROUGH!)

Good luck! I'm just hoping that they'll all get used to their attachments as they get older!
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May 26th, 2009, 09:37 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
I was going to recommend special toys like Jess did. Hopefully you can find something that works.

Thanks Yvonne (Jaidynsmum) for my beautiful siggy!

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May 30th, 2009, 09:44 AM
Dacontay4's Avatar Mega Super Mommy
Join Date: Jan 2009
Location: WI
Posts: 2,218
I like the idea of the "naughty toys" lol. It's just so hard to distract her! She LOVES being naked, but I'm so afraid to let her now. She's also figured out how to rip her pouch off and smears poop everywhere. The thing is she IS old enough to understand 'no.' She seems to think it's a game, she does it as soon as she can see she can get away with it, when I turn my head or whatever, she does it FAST. She's figured out how to get out of her clothes and bandage...we put her in a one piece and ace bandage and every morning when we wake up she has poop smeared all over everything. Litterally, every morning for the past week! She's pulled her feeding tube out 7 times...and thats just the times she's succeeded, not the times she's tried and been stopped.
Wife to David
Mommy to Mady, Connor, Taylor, Grier, Chandler, Evalyn, Bryce and Jude
2 sweet angels born straight into Jesus' arms:
Mason Charles (1/3/05) and Kaydence Faith (4/30/10)

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May 30th, 2009, 09:47 AM
Platinum Supermommy
Join Date: Apr 2006
Location: Maine
Posts: 5,882

My daughter has a central line on her chest and it is IMPOSSIBLE to keep her hands off of it! If she can see it she is pulling on it..and even when she has her onesie on she is itching at her dressing. I don't have much advice, besides just keeping it covered as much as possible, but I wanted to let you know I feel for you!

It really stinks that we can't let her crawl around in her diaper like other babies can..especially when it's hot out.

Darn tubes!
Mommy to- Ethan, Lucas and Maggie
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