Living with Trache

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texastracy

Senior member
Joined
Jul 27, 2013
Messages
500
Reason
PALS
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
Home again after 12 days in the hospital. Eveything went well. Had first trache cange, that was hard. But I survived.
Got spoiled by hospital, plus trusty suction device blew up at 5: 00 Friday afternoon. Our new resp. group brought a portable one out.

My father in law, and his dad in law created a suction device that is stronger and gets the job done in one time instead of two or three times down. My suction needs dropped by half when they switched my trache to a smaller one. Hopefully that will lessen more.

More soon.
 
Glad you're back out and doing OK.

I'm sure I speak for everyone when I say thanks for the info and tips and I'd personally be interested in seeing what your FIL and his FIL created.

Take care,
Brad
 
Glad you are home. Hoping things continue to improve
 
After the horror that GreyBeard endured, I am so glad and so relieved to see you posting, and posting in good spirits.

Welcome back! 8^)
 
Thanks. I got lots of practice with my eyegaze computer, also, in the hospital. So that was great benefit.
 
Welcome home, Tracy. It's good to see you posting, and I'll be interested in what your menfolk created also!
 
So good to hear from you Tracy, and happy the trach is working out.

Best,
Laurie
 
WELCOME BACK (I got the welcome back Kotter music in my head the moment I started typing that and it seemed so appropriate!)

I am beyond thrilled to hear how well you are doing already. I love home made things for PALS, and getting the suction working well is just such a WIN :)

What a bonus that you have had that time to practice on the eye gaze too. I hope this means we get to hear more from you again beautiful friend :)
 
Welcome home and I am extremely happy to see you posting again. Glad you didn't catch anything in the hospital and you're getting all your equipment squared away. So good to hear from you
Hollister
 
hi Tracey! glad everyint is going well
 
So good to hear you're home and doing well and have all that creative energy (FILs) working on your behalf! Great to see your post and looking forward to more with your new eye-gaze skills. :) You are such an encouragement!
 
Hi Tracy, I have this vision of you being hooked up to a big red Sears Craftsman Shop Vac for suctioning! I don't know about the men in your life, but my husband won't use a 2x4 if a 4x4 is possible!

My suction machines are DeVilbis brand and the amount of negative pressure can be adjusted. John says the gauge on mine goes up to 600 and that seems very strange if the max should be 200. The recommendation is for 150 and no more than 200 for adults to avoid damage to the trachea beyond the end of the trach tube. Tracheal hickeys are so adolescent! But high levels of suction could cause a little bleeding.

I seldom need more than one suctioning to clear the mucus out unless I am really gunky or have a person suctioning me who was trained to do a fast in and out suction. A slower suction with the suction catheter being twirled around rather than poked up and down does a much better job of search and destroy. As you get used to suctioning, you will be perfectly comfortable with that. One problem is that when you need suctioning when you are not using the vent you are not as well oxygenated and feel more suffocated during suctioning. Anyway, you will discover what works best for you as time goes on.

I have always been amazed that trach and/or vent users aren't automatically given two suction machines so they have a backup. With a vent failure you can use an ambu bag but there is no substitute for a suction machine when you need it. I would purchase a back up on my own if insurance wouldn't cover it. Trach changes are never fun but definitely get easier. That first one is really scary even while you can still breathe on your own!
 
Good info guys. We will forward the suction pump info once we have it all worked out and working. Thanks for the support!
 
TT, how's it going?

I realize it's still early, but could you let us know how this is working for you?
How labor intensive is it for your CALS, are multiple people caring for you, are they getting any sleep, are YOU getting any sleep, etc.?
 
We have been home for a week today, trache has been in for 2 weeks 3 days. Breathing is easier for Tracy. The secretions come and go kinda but there is a lot of suctioning at the moment. We are told that it will gradually decrease. She gets frustrated at the gradualness...
I am her primary caregiver. I have a girl helps me out for an average of 30 hrs a week...the rest I do. Sleep. She sleeps pretty good, sometimes not even completely waking when she needs suctioning. I have the bipap set to beep where I know when she begins to wake up and that is working pretty good...she is not having to wait on me. I get some 2 hr sleeps during the night at best so far. Quality of life is still better. Sleep was scarce before the trache too. Having the trache, so far, requires near constant monitoring due to the need for suctioning. I can step out for a minute or five...but not for very long...at least right now. Hope this helps Greg. Don't want to discourage anyone or influence any decisions, just trying to call the spade as I am seeing it.
 
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