C'mon Bipap - Do Your Thing

We went to the appointment today with Dr. Garnaas.  It's actually a clinic they sent up every couple of months where patients see OT, PT, dietary and social work along with seeing the doctor.  Dad didn't really feel up to the whole thing, but did see PT who gave us some good tips on why using a walker sometimes around the house is a good thing and also helped adjust the foot rests on his transport wheelchair.  They also ended up seeing OT and social work.

Dr. Garnaas spent a long time talking with us and answered any questions she possibly could.  Dad has significant pulmonary/lung involvement.  Suffice it to say he did not pass this overnight "O2 test" last week, and actually ended up with some dangerous O2 levels.  Dad has been using the bipap more like a rescue treatment or as needed, but she strongly encouraged him to use it more "full-time" at night and as needed during the day.  I have never used a bipap, but I am guessing it's not a lot of fun.  The hope is to keep those lungs functioning as long as possible, and maybe in the process he won't feel so crappy during the day.  Pulmonary involvement is one of the worst things for ALS to attack first, but we are so happy that dad can still walk around the house and talk to us. 

OT is going to help get some assist devices for use around the house.  We will also be involving hospice.  It is a scary word and hard to say (or type) about Dad, but Dad is at peace with this whole thing, and that helps all of us.  Dr. Garnaas explained how helpful hospice can be with arrangements and maneuvering through the red tape of insurance and Medicare.  Involving them doesn't mean "the end" is imminent, but they will get to know Dad well and be able to assist with his comfort through the months ahead.

We did discuss the feeding tube, which he does NOT want right now and Dr. Garnaas feels it is not an immediate need.  Plus - he is the boss, and if he doesn't want it - that's that!!
 
I am thankful today that I can talk openly with my parents, which is such a gift at a time like this.  I love that we know our dad and Lynette and I could read him like a book today at the appointment.  Bill would have caught the exact look we did and known exactly what it meant, too.  I love that we can all give each other certain looks and we know what the other person is thinking.  I loved hearing Dad tell Dr. Garnaas today about how much money I raised for the ALS walk back in October.  It never sucks to hear your parents brag about you, does it!?!?  And, I loved that the money we raised and the participation in the walk made him happy!!  I love that Mom is such a spaz sometimes and can lighten the mood by just being Joan.  Even when things are bleak, there is so very, very much to be thankful for.