I used a BiPap until my throat completely closed down and it sounded like a whoopie cushion all night. So I got the trach 18 months ago and am now on two ventilators almost full time. But I love the trach. I take care of it all by myself and it really has been less of a hassle than the feeding tube I had put in six weeks ago.
You asked what questions and here's what I learned about the trach. There are basically two kinds of trachs and surgery: transcutaneous (through the skin) which is a super simple procedure. Like the feeding tube, I was told it was about a 20 minute procedure. The first ENT I saw wanted me to do this but then I had a doctor friend suggest another ENT and he told me that since my disease was so aggressive (in other words, I don't have long to live) - that I'd be much better off getting a "permanent trach".
The transcutaneous trach is a relatively minor procedure, often done at the bedside or in the ED, is easily reversible. That's the good news. The bad news is that since the tract from the skin to the trachea is left open, granulomas are very common. And the tracheal granulomas are much, much more problematic (painful and bloody) than the ones with a feeding tube. The permanent trach is done in surgery, takes an hour or more and involves cutting a notch in the trachea and skin and suturing them together. In other words, you have a closed tract so fewer granulomas or other problems. For me, I had very little pain after the trach surgery especially compared to the feeding tube which got a minor infection.
Before the feeding tube, my throat muscles would decide, with some food or drink halfway between my mouth and my stomach, to just stop and take a break. This would leave me with food or drink in my throat and no way to breathe. I developed several aspirational pneumonias as a result. The first time this happened with the trach (before the feeding tube), I just told myself to relax and breathe slowly through the trach. After a few minutes, the muscles in my throat came back and the food went where it belonged.
The other suggestion is to find a great DME. The first one I had was a disaster and so I found a team of Respiratory Therapists who run a DME. Not only to they make sure I have the best supplies; they are on call 24 X 7 X 365. For the first year with the trach and vents, the came out about once a week to check on me.
Now, the really bad news. AFTER I got the trach I found that there is no assisted living facility that will take me. They all tell me their insurance won't cover trachs and vents. Worse, I was told to go onto hospice. However, I was told that since I have a trach and on a ventilator, the hospice team cannot take me off the vent. But here's the really bad news, none of the hospice folks in my area can provide the trach or vent supplies. Catch 22.
So my respiratory therapists who handle this all the time with ALS patients, suggested I skip hospice and get a good palliative team - which I did and we have a good end of life plan in place w/o hospice. My daughters are also over 1000 miles away and I haven't needed them (one is an MD).
My wife has terminal cancer that has caused serious dementia and I'm her primary caregiver. However, the feeding tube, trach, vents, and power wheelchair are all managed by me with some help such as my team of RTs who handle the breathing stuff. Plus, we hire caregivers from time to time when we feel a bit overloaded.
Oh and we live in a retirement home and so my wife's meals are all prepared by the home. The net/net: Your dad may be able to handle it with a little help and a bunch of motivation. Good luck. Once we patients come to grips with this terrible disease, I think it's harder on those we love than us.
