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home again

Mar 18, 2007
Madison Heights
Hi everyone!

Took mom to her pulmonologist today. He has ordered an ABG (arterial blood gas) blood test to find out if she has too much CO2 in her lungs. He mentioned that we need to start discussing her getting a BiPap machine. As he is telling us this, my mother is shaking her head no. I know my mom does not want a ventilator, but I'm hoping she decides that the BiPap would be okay. I am going to lead her to this group, and hopefully, it eleviates some of her concerns. I mentioned the cough assist you all told me about for her phlegm, and he says he will get one for her. So that is good. She has the blood work done tomorrow and a follow-up appointment on 08/08. We will know then how to proceed. Keep us in your thoughts and pray for my mom to have strength as she makes this decision, as I will keep you in mine.

You, and your mom, will be in my prayers. There is always difficult decisions with ALS, some just take adjusting to the idea. I know my mom resisted a feeding tube until it became impossible for her to swallow without choking. I think the bipap will be our next major hurdle, so I certainly understand your concerns. Your mom may just need time to accept the idea. Does she understand what a bipap is, and that she may not need it all the time? Good luck!
Hi Lisa- hope things go as well as possible for your Mom when she goes to the doctor. There are a couple of reasons why PALS resist the bi-pap. If you can get her talking about her concerns you might be able to help her. Sometimes PALS hate the thought because it represents yet one more reminder of their condition. Sometimes it looks like it may be confining. Be sure to ask for the nose pilllows if she has an issue feeling confined. And she can try it for short periods while watching TV, which will help her distract her mind from the machine. If you can find out what her objections are, see if she will agree to get it to have it on hand just in case she is feeling real tired some day and wants to see if it helps. Just a few ideas and there are more on some of the other threads. Good Luck! Cindy
Hi Lisa. I've been on bipap for sleeping since Jan. 05. It's not really that big of a deal. I'll talk to your mom if you think it might help.
Thanks everyone. I did talk to her about it last night, and explained that people with sleep disorders use it too; that it's not a ventilator. She seems much more accepting of the idea now. Thanks for the f.y.i. on the nose pillows, I will make sure I mention it. I did read some other threads about the bipap and that helped alot in explaining it to her. I also had her look on this site last night.

And Al, I will let her know you said that you were available to talk to her. All the positive re-enforcement she can get is a GREAT help!

In our experience the obvious symptoms that indicate the need for a Bipap don't always present themselves.

My husband lies flat in bed, does not complain of shortness of breath but has been extremely fatigued of late. It's been very hot for a long time so that didn't seem unusual.

However at the Clinic this week they found that his CO2 levels were high (55). We've been provided with a Bipap very promptly. He wore it for the first time last night (but had worn one in the Sleep lab the previous night) and woke because the mask was uncomfortable. I obviously didn't get it quite centered as it has marked the skin on the bridge and right side of his nose. Probably done some minor skin damage as the marks remain after 9 hours.
Hi landscape. It does take some getting used to to get the mask right and sleeping so that the mask is not pushed over or off the face. Your husband might find that after a while he needs to change masks if it still marks but depending on skin type the marks can stay for quite a few hours. Good luck.
Thanks, Al. My husband has always slept on his back throughout the night and this makes things easier with the mask. The marks on the bridge of the nose etc. still remained at bedtime so I used a small piece of the 'Extra thin DuoDERM' and that helped. I backed off the straps a tiny bit and maybe I need to back them off more as he was trying to adjust the mask a lot of the night and finally needed it off at around 2:00am. I'll contact the RT on Monday.

On a side note, I've made a bunch of handkerchiefs out of diaper flannelette and these work much better than regular handkerchiefs. They are soft and absorbent and so comfortable on the face.

At what point is a bipap indicated? My sister is getting one this week,and I am not sure exactly how the doctor determined it was time for one. Thanks,Mary
Hi Mary. Usually a sleep study is done or an arterial blood gas test to measure the amount of CO2 in the blood. A good Respirologist or Pulmonologist can pick up on subtle signs of breathing difficulty just by observing the patient for a while. Mine did. There are other breathing tests routinely done for ALS patients that can point to a need for a Bipap as well.
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