Saturday, August 30, 2014

Modified Tops for Nursing and G-Tubes

I've been designing clothes for my mom as she has progressed through different stages of ALS.  I won't be using pictures of my mom out of respect for her privacy and dignity.

First she got a  feeding tube, also known as a percutaneous endoscopic gastrostomy (PEG).  This meant she needed access to the port and the carrier for the tube which is kind of like a fanny pack.  Clothing couldn't be tight across the area, and she didn't want to just lift her shirt, because that left her stomach exposed (or worse if she wanted to wear a dress), not to mention that the fabric had to be secured out of the way.

I immediately thought of some of the things I'd made for myself when I was nursing.
Fabric overlaps and secures with Velcro
Stretchy fabric is pulled out of
the way for easy access.


A similar concept with a knit fabric.  No need for Velcro because the fabric was overlapped more since it was stretchy.

I also began purchasing
"arthritis bras" and
altering her bras to
make them open in the front.
 
 She was actually fairly happy with t-shirts on a daily basis, but wanted some nicer dresses for church.  She'd also begun having issues with the use of her left hand so needed clothing that was easy to put on and take off (no awkward back zippers!).

Voila!  The wrap dress!

Next problem - if you untie a wrap dress, it drapes open like a bathrobe and once again shows everything. So I extended the under panel to go all the way across the body to the other side (in other words, the "wrap" part of the dress was pretty much faux.  The under panel covered the body of the dress and was secured with Velcro in the upper shoulder to prevent it from sagging.  Cut a slit in the under panel to accommodate the PEG/ feeding tube and we were done!

Until the next issue - Being dressed by caretakers and making accommodations for being in a wheelchair!


5 comments:

  1. Mary, your adaptation of the wrap dress is brilliant! Your mother is so fortunate to have your creativity on her side. Not only does the wrap dress provide access to the tube, but would be easy to put on and be very comfortable as well. I love what you have done!

    The way you are thinking, applying the principles from tops for breastfeeding, is clearly the right direction. Since the PEG "hardware" is larger than a gastrostomy button, you need the larger opening that the nursing openings provide. (Which, btw, the white/black-trimmed top in your photos is really cute!) Could you apply the same concept, just lower, in a dress with princess seaming?

    I don't know what method your mother uses for feeding, but we have found that fanny-pack, worn to the front, not only holds the feeding pump where it is easily reached, but provides some coverage for discretion, too.

    I'll keep noodling about what other styles might lend themselves to being adapted for a PEG tube. In the meantime, I've bookmarked your site to make it easy to come back with those thoughts. Keep up the great work--what you are doing is very important. I'm so glad you are posting so others can apply your adaptations.

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  2. My mom uses "gravity" feeding. Which means she attaches the tube (that's permanently attached to her stomach) to a syringe which she then fills with Ensure type drinks (and water, Miralax and meds...). She has a cool wooden stand that she hangs the syringe from (letting gravity do the work) since she and her husband don't have the hand strength needed to push the plunger on a syringe.

    As for the tube itself she keeps it in the flat velcro pouch on an elastic band like what's pictured at the top of my blog post. To get out the tube, she has to be able to easily access and open the velcro pouch which she wears under her clothes. To sleep, she tapes the tube to her stomach so it doesn't get pulled if she twists during the night.

    A slit in a princess seam has a few issues. One, she has to be able to access the pouch, so it would have to be a really long slit. Two, she's in a seated position most of the time so it gapes open. That's why when I adapt a top with a princess seam (like the floral print), I make sure it has some overlap. It still gapes (as you can see in the picture, but you can't see skin). Still working out how to secure things without Velcro, because my dad is hopeless about these kinds of things, plus he has "essential tremors" which means his hands shake really badly) so he tends to leave things gaping open or put on askew, because he just can't do hooks, ties, buttons... still working on that.

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  3. Just a thought about the sleep issue, if tape becomes an irritant to your mom's skin (which, rats, it can over time). Of course, I don't know if your parents' motor dexterity allows them to use safety pins, since that is part of the plan.

    When my daughter had a PEG tube while her stoma healed, we made a plastic medical tape "flag" of tape wrapped around the tube, about halfway up, with 1" ends attached back on themselves, Then we pinned through the flag with a diaper pin to her diaper (underpants would probably be a fine substitute) to keep the tube from getting pulled. Any tugging was absorbed by the tape and diaper.

    I can see how the princess seaming, even with ample overlap as in your floral top, could be a gaping problem. Have you ever tried magnetic purse closures? They might be a good substitute for Velcro. They are sometimes used underneath decorative buttons as closures on blouses and shirts for people with limited motor function. They aren't cheap, but if samples sets from the fabric store work, can sometimes be found online in bulk for reasonable prices. Izzy Camilleri (http://www.izadaptive.com/) uses these in her wheelchair fashions quite a bit. Just a thought...

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  4. Rose-Marie - I wish I could find more resources and quicker because as soon as I figure something out, my mom is unable to use it any more. I only discovered the magnetic purse closures last week. Thank you!

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  5. Mary, I'm sorry ALS isn't playing fair. It is not a nice disease. Your parents are so blessed to have your support.

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