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SLAUGHTER1555

Distinguished member
Joined
Jul 12, 2015
Messages
107
Reason
CALS
Diagnosis
05/2015
Country
US
State
Oh
City
cincinnati
Hi Cals and Pals its been a while and since the diagnosis last year things have been horrible:( one thing after the other.

So during all this i have hurt myself mainly my back to the point i could no longer care for my Pals i had to place him in a care facility😞. This has been one of the hardest things i have ever had to do.

The adjustment to the facility has been hard! We are a young married couple and this has been brutal! My pals has stop using his bipap dont know why but lately he has been having trouble breathing at bedtime if he slides down in the hospital bed slightly. Every night they check his oxygen levels in his blood and it is 100.
Can you have good oxygen levels in your blood and still have breathing problems with ALS? I think not using his bipap is playing a part in his difficulty breathing. Last PFT we had done was like 43% not sure what it is now.

All this is so new for us still not sure what to expect with each change in ALS any information would be great.

He is in a good care facility that specialize in neurological disease. ALS is new to their facilitu my pals is the 4th one there. They mainly have MS and ppl who have had strokes. Each resident has their own room that they can paint and make their own. Lots of activites OT and PT. 3 times a week the place is beautiful you wouldn't even know it was a care facility. But it still hard to leave him there.

Well that's where we are now.
 
Our neurologist told me it is not unusual for PALS to die with near 100% oxygen saturation. PALS generally have more difficulty breathing out than breathing in, so the imbalanced breathing causes CO2 to build up in the body. This is a very different kind of respiratory failure than is experienced by people with other diseases. BIPAP is prescribed because it helps the PALS breathe out, especially when laying down.
 
Our neurologist told me it is not unusual for PALS to die with near 100% oxygen saturation. PALS generally have more difficulty breathing out than breathing in, so the imbalanced breathing causes CO2 to build up in the body. This is a very different kind of respiratory failure than is experienced by people with other diseases. BIPAP is prescribed because it helps the PALS breathe out, especially when laying down.

Thanks for responding so fast and that makes so much sense. I know how the bipap work but he has stop using it and won't say why smh. It's in his closet i told him his breathing is being affected cuz he's not using it.

Sad part is not sure the nurse's are unaware of this i tried to explain this to the nurse she was clueless. Im going to call our neurologist tomorrow and talk to him.
 
Consider asking to have his blood gases checked. I believe that's the only way to check for C02 buildup.
 
My Hubby, John, uses a Trilogy Machine to help him breath..I feel it truly has saved his life. At first they had oxygen hooked up to it....but he didn't need it, so he just uses the Trilogy.

Love and prayers,
Sheila
 
Slaughtered, an important question: do they have him on oxygen?
 
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