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sheepthechicken

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CALS
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CT
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Bristol
Hi everyone!

My dad got his bipap about 10 days ago (last visit in Sept his spir was at 55, most recently was at 35) and as expected he has had major anxiety due to air hunger so he also got xanax. He's had a number of 911 calls and a few er trips before the bipap so once he got it even though the order was only to be on it when napping/sleeping, he basically started using it 24/7...as of a week ago to the point where he was afraid to even take it off to eat or get out of his chair to go to the bathroom.

Overall, besides just use of the bipap, it seemed like his condition was getting worse rapidly. His initial diagnosis was PLS and his doc didn't think it would progress beyond his arms, or if it did it would take years and years...it's only been 2 years since his Dx and he has little control of his neck, clearly respiratory issues, and it seemed like he was beginning to have some weakness in his legs.

After his last clinic visit two weeks ago I requested a nurse visit at home because of some pressure ulcers on his bottom, and they highly recommended in-home hospice which we accepted. For the first few days he seemed to be getting worse...they replaced his xanax w/ ativan, put him on a fentanyl patch and then as of two days ago started him on Morphine.

I've seen on this forum and elsewhere (and asked the LPNs that are here) that the low doses of morphine seem to help not only with the pain but also with breathing. Yesterday he ate for the first time in five days, he took off his bipap completely and it's now been off for 12 hours straight with no sign of air hunger, and he's talking clearly for the first time all week (except when the ativan first kicks in which is to be expected).

ANYWAYS (wrap this up jessica haha)...has anyone else experienced this? I am also primary caregiver for my 96-year-old grandmother and she was *terrified* when he decided to take off the mask...she thought dad was giving up and deciding to stop breathing (he is DNR/no feeding tube/etc), but then when she saw he was starting to eat and talk she was ok. The hospice RNs will be deciding tomorrow whether or not to recertify him, but they are leaving it up to me and my dad whether or not to suggest he wears the bipap mask. They figure even though the doctor "ordered" it for a certain timeframe, if my dad doesn't feel like he needs it, and he isn't turning blue, then it isn't necessary? I agree, and I feel like for the first week him using it all the time was more of a response to his panic and now the medicine is making him realize he's ok (well, ok-ish), and if he is comfortable I don't want him to be forced to wear it even if it means less oxygen and more CO2 buildup faster.

Thoughts?

Thanks :) (and sorry for the really long post, I lost points all the time in college for too-long papers)
 
You got it, sheep.
Thanks for looking out for your dad.

Best,
Laurie
 
Hi Sheep,
Yes, let your Dad decide when he wants the bipap. You are a great, loving daughter.

With fentynal patch please be sure he gets laxatives as opiates are very constpating.

Sherry
 
Definitely sounds like the BiPAP made him think he was at death's door without it! With the Ativan taking care of the panic, you are just now seeing his true respiratory status. Encourage him to use the BiPAP overnight to improve his daytime breathing stamina but let him decide if and when he needs it during the day. He will probably find he is more comfortable using it when/if he takes a nap, and after a meal to provide extra O2 for digesting. ... I wonder what the heck the doctor said that scared him so bad?
 
Wow! You are such a wonderful carer for your dad and grandma!
 
A low dose of morphine on a regular basis has worked wonders for me in terms of curbing air hunger. If I feel air hunger coming on, a little Ativan and morphine preempts a crisis. Glad to know your Dad is doing better. Air hunger is so scary.
Charlene
 
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