nwafriend
New member
- Joined
- Jan 21, 2008
- Messages
- 6
- Reason
- Loved one DX
- Country
- US
- State
- Arkansas
- City
- Centerton
I have posted very little since my mom's diagnosis in January '08. She has had such a fast decline, and I have been needed a lot with helping out my dad, so the computer is last in my life. I was hoping someone can help give me a prognosis on our situation or maybe a glimmer of hope.
My mom has only eye movement left. All other muscle use is gone. She uses the Tobii computer to speak (it follows her retina in her eyes.) She receives medication and nourishment through a PEG tube only. She has been using the bi-pap for about two months now, but only for two hours in the afternoon.
We went to the pulmonologist yesterday and received more bad news. Her vital lung capacity is now down to .53 liters which charts her at 16%. Her norm should be 3.37 liters. Her breathing has become very labored. Her exhale is the hardest for her and is very shallow. The pulmonologist said she must wear the bi-pap all night now to get any marked help from it. I knew when he told us this fact that my mom would not give in. Sure enough, we got home and she said, "No bi-pap at night." I think she is tired of living in this state. I guess I can't blame her, but I also don't want to see her suffer without the assistance of the bi-pap. She had already made the decision not to vent, so I guess she figures why keep trying.
I guess my question is how quickly will we see her go down with these low numbers. I know that eventually the bad exhaling will catch up with her because she can't get the carbon dioxide out.
My dad finally called hospice this week. I think it will be a big help to have them involved.
Any help or advice would be greatly appreciated.
nwafriend
My mom has only eye movement left. All other muscle use is gone. She uses the Tobii computer to speak (it follows her retina in her eyes.) She receives medication and nourishment through a PEG tube only. She has been using the bi-pap for about two months now, but only for two hours in the afternoon.
We went to the pulmonologist yesterday and received more bad news. Her vital lung capacity is now down to .53 liters which charts her at 16%. Her norm should be 3.37 liters. Her breathing has become very labored. Her exhale is the hardest for her and is very shallow. The pulmonologist said she must wear the bi-pap all night now to get any marked help from it. I knew when he told us this fact that my mom would not give in. Sure enough, we got home and she said, "No bi-pap at night." I think she is tired of living in this state. I guess I can't blame her, but I also don't want to see her suffer without the assistance of the bi-pap. She had already made the decision not to vent, so I guess she figures why keep trying.
I guess my question is how quickly will we see her go down with these low numbers. I know that eventually the bad exhaling will catch up with her because she can't get the carbon dioxide out.
My dad finally called hospice this week. I think it will be a big help to have them involved.
Any help or advice would be greatly appreciated.
nwafriend
