just got vent

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AHands

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Carrboro
just got trache, vent & peg. what should i know
 
Yeah ! Congratulations on choosing life ! What to do now ?! ENJOY LIFE !
Are you home ? It's much better and easier if you are at home. My new Dr. comes to our home ! He has few vent patients ! So you have caregivers family trained to care for you at home? Joel knows vents real good ! I bet he comes and helps you ! I hope e to get my vent in April !
 
I'm delighted that my dictation software still recognizes his voice even with the tracheotomy and ventilator!

Yes, I am at home now, after almost 2 weeks in the hospital. Spending days lying in a hospital bed , both paralyzed and mute, wasn't much fun. Learning to talk again was a challenge -- there's at least three methods you have to try. Last night was my first night at home. Initially my tidal volumes were about 300 or 400 mL. Now they have improved and are often over 500 mL. This morning though, all of a sudden, I could not get over 100 mL and the alarm kept going off -- frightening. We checked all the hoses, tried removing and reattaching, nothing worked. Then we suctioned -- winner, winner, chicken dinner! Suctioning did the trick. I had another episode just like that a couple hours later. Of course this time we went straight to suctioning and all was good!

They say the inner canula should be changed daily. But, they did not change it daily in the hospital. Daily seems excessive to me... but what do I know?

Joel who?
 
CONGRATULATIONS! That is marvelous!
It is going to take a month or so to get into a routine and know what to do in every situation. You will soon start to relax and not be concerned when the alarm goes off. Most times it means you need suctioning, sometimes the inner cannula has to be changed, other time the exhale valve has gotten moisture in it. It does not take long to get comfortable with these things and to not panic.

I have put my experiences on a website. Have a read.
Life With ALS
 
When I inhale, the turbine in the ventilator sounds like an ocean wave rushing in over a Pacific Coast beach of pebbles. When I exhale the PEEP valve hisses like the wave retreating through the pebbles...
I sat for hours with the peep valve suspended a couple feet in front of me and the ventilator a couple of feet beyond that, listening, learning to relate this sounds to my breathing and learned to control them. Over my life I have grown rather accustomed to breathing through my nose or mouth -- now I had to concentrate on my lungs. Unfortunately when I moved to the bed I was on the other side of the ventilator and the sound pattern changed disturbing my recently devised understanding of breathing...
 
You can't hear my ventilator at all and I also have very quiet exhale valves.
 
Glad to hear you're planning on hanging around Adrian. Good luck.

AL.
 
Maybe you need the company that set you up with vent to fix or change it to one that does not make noise. I could never live with that noise and I am getting vent soon and you can bet I'll be making more noise than the machine if it's not perfect . lol :)) Praying for you ! Enjoy today !
 
My husband just got his trache & peg. He is still in the hospital. Are you all on the vent 24/7 or just at night? My husband is having a hard time...

Did you have a hard time finding help? They told us we must have someone 24/7. Was wondering how or who or where you find help. My husband is a veteran but I can't seem to get any answers as to whether the VFW will help finding help to be with him. They told me he cannot come home until I have someone here to give me a break or when I sleep. This is so new I'm just not sure what I should do or where to go. They told us they would train people for the vent and trache. We cannot afford skilled nursing care.
 
He is not in prison, if he wants to come home they can't stop him.

Having said that, I am on a vent 24/7 and my wife does over 90 percent of the caregiving. We get some relief help from our son. You also don't need expensive skilled help. It is actually quite easy to take care of someone with a trache and vent so anyone can be quickly trained to do this.

I will leave some of the other questions for someone more experienced in what help is available in your area.
 
but if the hospitals are anything like they are here - my experience since I let myself out of hospital a couple of months ago - officialdom decides that you can darn well wait. They have now had my form for 100% help, which needs their goahead, for three weeks and when I phone to ask them to go ahead with it they are never available, never ring back and they do nothing. Ditto the RMIs they are insisting I do again were given for 2 months ahead so I have to wait. these small minded people who think they are gods (sorry, I am speaking of one neurologue in particular) cut you back if you dare to try to take your own life in your own hands.
Can you see it makes me cross? But I worry it might often be the case if you decide to let yourself out of hospital without their ordering it.
 
Adrian,
Thank you for sharing. You and Joel (and others) have done a great deal to remove our fears concerning a trache. Your contribution cannot be measured. You are angels.
Dear irismarie, we are going to have to do some serious Americanwhoop-ass on that hospital. They are holding your paperwork hostage, because you're a bit independent. Is there no one we can write to? In the states is a law, a document " the rights of patients". Is there something similar in France?--JK
 
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