Time to say Hello

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asmith3079

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Long time lurker and figured it was time to actually become more active with this great community and say thanks for all the amazing tips, advice, and information everyone shares here.

My partner and PALS has what seems to be a quick progression. Bulbar onset, DX Jan '17. PEG and SPCath by end of summer, and new technology filling up the house :) His most recent addition was a port placed a bit over a week ago that ended him in the ICU for a bit.

Looking forward to actively joining the community and sharing what I have to share.
 

wishmobbing

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Hey A!
Welcome to you, your PALS and your tech-park at home!
The port buisness sounds scary, hope he's on the mend from that ICU visit.

Share stories and grieves, by all means. Happy to have you joining the conversation.
 

asmith3079

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He's back to his normal self thankfully. I'm pretty sure he doesn't remember any of it honestly. I think the surgeon had him laying flat, and put him on oxygen. They didn't put him on bipap until he was in respiratory failure and Co2 through the roof. He eventually woke up after the levels got stabilized and began his teasing of the nurses who had misplaced the pants he went under in.
 

wishmobbing

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Good it was such a short scare. Oxygen without BIPAP? Sounds like amateur hour to me, but what do I know after reading on this forum for just a couple of month? ;-)
You seem to be in reasonably good spirits, too. Troop on!
 

lgelb

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Welcome, Ohio. Sorry to hear about your partner's progression. Let us know how we can help.

I would caution you that when you report that "they" didn't think in terms of BiPAP early enough, that is an example of the need to be proactive as a CALS. You should have a folder of all visits, stays, tests, results. The margins between "too soon" and "too late" are often narrow to non-existent in ALS.

Don't be afraid to ask questions and to dig your heels in when something doesn't seem right, even to move on if a clinician or facility isn't up to snuff. We're always here to advise from our experience as well.

It would be nice if we were able to rely on health care professionals to do the right thing at the right time. We can't.

Best,
Laurie
 

Atsugi

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I second and third Laurie, at al. You're very welcome to join in, A.

I agree that when in hospital or whenever a medic is around, never leave your PALS side. Medics from nurses to specialists are trained to pretend they know what they're doing, but when it comes to ALS, nope!

You know your PALS better than anyone, and you probably know ALS really well. Never let a doctor take over unless you're sure she knows ALS.
 

asmith3079

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Lesson learned for sure. The treatment this time seemed really out of line with how he was handled 6 months earlier for his PEG and SPCath. We purposely traveled to make sure he has procedures done with someone who deals regularly with PALs, and the Dr did his previous procedures and knew him and us. The notes post procedure specifically stated he has "no respiratory weakness" which isn't the case (obviously), wasn't the case at his previous procedure/notes, and is contradictory to his medical history and discussions had with them.

I chalk it up to a bad day as the whole hospital was running a couple hours behind due to a sudden mini blizzard. He even had a "drug allergy" wrist band initially instead of "fall risk".

Again, big lesson learned. Hammer it into them, and also pester everyone once the procedures estimated time has elapsed. They didn't come out to let us know what was up until an hour after the procedure and all their attempts to reverse sedation failed and they needed to talk about venting him.
 

wishmobbing

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Aggravating when stuff like that happens, especially since you took the drive and kept them on their toes. You got it! Team A-L-S, GO PESTER, GO PESTER!
 

lgelb

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I'd get the inaccurate notes corrected as well. In an emergency, someone might only read the most recent note or summary. And in a crunch, the note might be taken more seriously than the caregiver, unfortunately.

I also have to say, I'd look for a backup facility closer to home. A mini-blizzard should not endanger patients' lives. Procedures are procedures.
 

affected

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Welcome asmith!

What an awful ordeal for you both :(

May I ask what the port is for - radicava?
 

asmith3079

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Yep, started his second round yesterday using the new port. Soooo much nicer.
 

Chincoteaguer

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Just occurred to me after reading this thread why UVA Medical ask us to bring our Trilogy 100 when my wife had her peg put in. My wife had not started using the device at the time. They actually put the Trilogy on the lower part of the hospital bed that was used for the procedure. At the time we just got the Trilogy and I was unaware of the cautions for using oxygen for ALS patients. It was on this forum that I learned about buildup of C02. Question: If for any reason my wife has to go to the emergency room should I bring the Trilogy 100 and should I insist that they not give her oxygen? She uses the device during the day as prescribed by her doctor (4 hrs) but has no problem with "air hunger".
 

lgelb

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The #1 rule for ER visits is try not to have any, but if you must, have a firm objective.

Yes, in that scenario, I would certainly bring the Trilogy so her settings will be correct if she has to stay overnight. Generally respiratory has to sign off on it, but is thrilled to do so. They can get you distilled water for the humidifier if you do not bring it.

As for oxygen, the most likely reason you would be in ER in the first place is something like pneumonia, which may require oxygen with the Trilogy for stabilization, short-term. But anyone proposing oxygen should have a clear rationale and understand the tradeoff with ALS. If that person seems as if they don't know the effects of supplemental oxygen on ALS, find someone else or in extremis insist that they read some of the literature underlying this on their phone or tablet.

Of course, going to ER requires that the P/CALS have discussed what the ER and hospital more generally is and is not authorized to do, and that one or both is prepared to act accordingly. Once at a hospital, quality vs. quantity of life decisions are often unavoidable.

Best,
Laurie
 
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