Have you have stopped and thought: Man, I really wish someone would invent something that would make (fill in the blank) easier.
For example. Parker now sports a cuffed trachs.
Cuffed trachs are a pain in the a@@. At the bottom of the trach there is a little deflated balloon. That deflated balloon has several edges that can cause some damage if a kid happens to yank that sucker out.
Damage that now has us doing trach cares 3x a day and using an ointment to clear up the inflammation/infection from that cuffed part. Not to mention all the granulation tissue that has grown since we started used the cuffed trach.
My idea? A cuffed trach where the ‘cuff’ deflated INTO the trach cannula leaving no sharp edges to cause potential damage.
Trach changes around here used to be a no big deal, one person by themselves gig. Not any more.
Or how about (CPT vests) or as we call them ‘shaker vests’ with velcro that lasts longer than 6 months. Seriously. That velcro gets weak and my kid can climb out of that sucker in a heart beat even if it is totally inflated and buckled on.
Today I actually used clothespins to keep Parker’s vest together.
And finally……how about a g-beck that a kid can’t yank off THOUSANDS of times a day? Men have walked on the moon and here I am putting Parker’s g-beck back on his trach nose every other second.
Why, lookee there. Somebody’s pulled off his gi-beck again.
So, what about you”
What grand invention do you wish someone would come up with that would make YOUR life as a parent of a kid with special needs easier?
Cause I know I’m not the only one who spends a good portion of her life cussing stuff like this.
Am I? Naw, I couldn’t be.
Leave your nemesis along with an idea of how to thwart it in the comments section. Who knows, maybe somebody has already figured out a way around you pita and they’ll share their ideas with you!
Ostomy bags that close with velcro. I can’t even begin to count the number of cleanups because Kayleigh yanked her bag open.
Sharon! We’ve done the ostomy thing too! Velcro would be a great idea!
We drill holes on both inner sides of the gi-beck and take the elastic off of the sides of a trach mask and tie onto the gi-beck. It doesn’t necessarily stop it from coming off but it remains on my daughter instead of on the floor.
My nemesis right now is the ever growing amount of oxygen tubing running around the house. When we let my daughter take it off for a few minutes the first thing she does it twirl around and around and around. Something most people take for granted.
Oh, Suzanne…….I never in a million years would have thought of that. Sweet!
Parker is bad about chewing on the tubing so we’ve started to provide him actual chewies instead. And man, can that tubing get turned into a 50 foot knot in about 30 seconds flat. ugh.
Twitter: kadiera
says:
We made “squid” chew toys out of oxygen tubing for my son. We had the HMEs that have the O2 port built in…and we zip tied it in place.
I think there should be a backpack for O2 tubing that automatically retracts the tube or extends it (like a tape measure) for kids with longer tubing.
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Kadiera, Parker LOVES to chew on that oxygen tubing. Great idea!
Twitter: kadiera
says:
Besides – old oxygen tubing is *free* (or at least, already paid for) and even if he drops it on the floor at the hospital, I can wash it there or give him another and throw dirty ones in the dishwasher at home.
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Cloth diapering systems for bigger kids. I have had to invent my own and sew them myself, but have had trouble getting them right. There are all kinds of disposables available, but I really would prefer a more eco- and wallet friendly version for my 50+ pound kid!
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