What happens next?
We had mom's ALS clinic appointment yesterday. All in all no surprises but we all walked away confused and lost so I am turning to you for your input.
Mom has been using bi-pap and O2 at least 23 hours a day. She is only off long enough for transfers (pwc, bed, toilet, shower). According to her husband and primary CAL, the machine is doing 100% of the work for her at night. Hospice has been involved since December and her pain, air hunger, etc is all being managed and is under control. She has a foley cath, feeding tube (4 cans a day + meds & water).
At her appointment yesterday, the SLP had a chance to check out her head mouse setup with the loaner dynavox machine since speech is almost completely gone.
In addition to all of the above, the biggest blow was finding out her FVC is down low enough it cannot be measured at all to very little accuracy. Basically, the RT guessed it was maybe at 4% of predicted. While we knew this was coming, it was still hard to hear.
I should also add her CO2 level was a 60, so her bipap was adjusted. O2 is still good (in the low 90's).
My main question is what happens next? What could get worse, what does the future hold and what can we do to keep her comfortable, dignafied and at peace?
I have accepted our fate and only want her to get what she wants. Mom is a non-vent and is speaking more and more about death and dying (in a healthy way). I think she is still grieving (I know I would be) and I know above all else she is just exhausted.
Thank you for listening/reading and any insight you provide. I know it isn't easy for our PALs, I just guess I'd like to know what to expect from here and what I can do to help. We live a couple hours away but visit almost every weekend so she can see the boys.
Sorry for the ramblings....peace and comfort to all!