JennAudrey
New member
- Joined
- Dec 20, 2016
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- NE
- City
- Ashland
Hi everyone! I'm new here, but my dad was diagnosed with ALS in March '16, and had been showing symptoms for maybe six months prior. His progression seems to be moving pretty fast, as he is using the bipap and sip 'n puff now, and has some movement left in his lower left arm and head/neck, but is completely dependent on caregivers for transferring and ADL. He has had a pretty rough go for the past three months with catching colds and developing infections from them.
He was adamantly against a trach/vent situation and we wrote his living will as such. After this last illness (which he is currently still fighting) he's thinking maybe a trach for secretion management isn't a terrible idea. I'm fine with whatever he chooses, but is it possible to have a trach for secretion management and not have the vent? He absolutely needs the sip n puff and the bipap to keep his O2 levels up on the 90s, especially when he's sick. He also uses suction and the cough assist, as well as a peg tube because he can no longer swallow without choking.
He comes to me with a lot of these things, and my intellectual side battles with my heart... I don't want him to be uncomfortable, but I know he will have a hard time deciding when enough is enough if he ends up on the vent, and I don't want my mom to make that decision (and by proxy, me, because I tend to be the one who gets asked).
I guess I'm just wondering if doing a trach without a vent is even a thing one does. His pallative care nurse doesn't promote trachs in ALS patients, and his neurologist hasn't said much as he's only been on NIV for a couple of months. Honestly, I don't know that he'll survive the procedure.
Any help, advice, stories, links are helpful... I need to talk with him soonish about it. Thanks for reading my rambling too... I'm doing much of this from 900 miles away in grad school.
He was adamantly against a trach/vent situation and we wrote his living will as such. After this last illness (which he is currently still fighting) he's thinking maybe a trach for secretion management isn't a terrible idea. I'm fine with whatever he chooses, but is it possible to have a trach for secretion management and not have the vent? He absolutely needs the sip n puff and the bipap to keep his O2 levels up on the 90s, especially when he's sick. He also uses suction and the cough assist, as well as a peg tube because he can no longer swallow without choking.
He comes to me with a lot of these things, and my intellectual side battles with my heart... I don't want him to be uncomfortable, but I know he will have a hard time deciding when enough is enough if he ends up on the vent, and I don't want my mom to make that decision (and by proxy, me, because I tend to be the one who gets asked).
I guess I'm just wondering if doing a trach without a vent is even a thing one does. His pallative care nurse doesn't promote trachs in ALS patients, and his neurologist hasn't said much as he's only been on NIV for a couple of months. Honestly, I don't know that he'll survive the procedure.
Any help, advice, stories, links are helpful... I need to talk with him soonish about it. Thanks for reading my rambling too... I'm doing much of this from 900 miles away in grad school.
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