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Active member
Oct 7, 2006
My last post was in June. I inquired about persons on vents, but I became too ill to go on so I had to go in to the ER for emergency tracheostomy. It has been 2 months since it was installed and I am very confused about how the home vent has been portrayed as being a possibility that can be accomplished without a secure support group in place.
What we have found is that we need RN's to stop by often to do certain things that the normal person without training can not do. For instance, I have never been a diabetic but now I need to monitor blood sugars because of the medications and the formula feedings. There have been new things introduced since I have come home that were not taught to us at the rehab clinic we were in.
We fortunately found a wonderful fully experienced nurse to come to stay with us for the first week. With her knowledge we have found the training to be incomplete from the clinic.
My recommendation to anybody that whishes to continue the fight with ALS and go on a vent is to plan ahead. Well ahead. First find out what you are getting into. Cost wise and caregiver planning. You will need to consider your caregiver the most consideration of all. I have my wife and my son as my primary caregivers. In one short week we have learned that they both need days off. You must consider them number one. They are the ones that love you the most and they must be spared the burden at any exspense.
Without them to guide others such as home health aides or cna's and RN's it's like fighting an up hill battle.
My goal is to help you to plan ahead and ask as many questions about the home vent before it gets to late like me. If we had talked to more vent patients it would have helped to get a foundation in place prior to the procedure.
SECONDARY CAREGIVERS, (cna's, hha's,emt's,paramedics etc.
NURSES (rn's, lpn's, respiratory care).
DOCTORS ( Nuro, pulmonary and general practice).
If you plan ahead this is a definite possibility. It doesn't require a million dollars so don't let some home health agency trap u into a open contract. There are plenty of people that will fit into your budget and times you need them. In this first week we have had more then enough applicants to chose from. We placed an add in the news paper and we posted some adds at the local schools and technical schools. Take time to interview them and ask their qualifications with ventilators and their physical condition. Screen out the weak ones and inexperienced ones. And finally, protect yourself with a contract that saves you from law suits. If they get injured at your home, you can be found liable.
Brent -

Thanks so much for the detail. I read a lot of posts about vents asserting it is do-able but lacking the "how to" details. Your post is very helpful. :)

Thank you very much for the detail of your experience! I think I am going to have to start printing out things like this to reference in the future.

Brent, are comfortable now? Please keep us up to date on how you are doing!
Funny you should mention printing out Brentt's post, CJ. While I was reading it I thought the very same thing.

It is a great post, Brentt, and very needed. The only thing I would add is to take just a little extra care when having strangers in your home. If you get an agency person and anything goes missing you have a little more recourse. But I know plenty of people who have done quite well hiring on their own. They just don't leave valuables or personal information like social security or bank statements lying around until they know who they have hired. Just as a precaution. Cindy
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