Thursday, October 1, 2009

Thursday October 1st

Holly. aka Wonder Woman, was Mares night angel, Mine too. Not long after Holly left. Mare had an episode. You experience ALS in all its many facets and then you think it cannot get any worse. And then it does. Up to this point, mare had some breathing difficulties but this morning she really had trouble. It was so hard to see your spouse gasping for air and asking you to help her breathe. I could do nothing except give her medicine. I felt so inadequate. I thought for sure i was going to lose her right there and then. After she caught her breath she wanted me to get in the bed and snuggle. I told her that there is not enough room but i would just hold her. On the medicine and with the mask she has this really sweet, cute voice and has these little voice inflections that make me smile. She looked at me and said with that voice, "I'll scoot over."

The doctor and nurse both came out later in the day. They suggested mare up her dose of Ativan which helps with her anxiety and air hunger. Marilyn agreed to increase her doses from .3 to .5 ml. We had drawn up a bunch of .3's already so the next time i gave her medicine we gave her .3 and then .2 of the other which left .1 in the syringe. I asked her what to do with the left over. She said without missing a beat, "put it in the dog food." For those of you that know our little sadie, you get it. She is a tad bit ADD. I laughed til it hurt.

On top of everything else, mare has had this tummy pain. The doctor was tying to figure out what that was and came to the conclusion that she might have a kidney stone. She has a history of them and it is acting just like one. The treatment is pain meds and lots of water to flush it out. They are coming over friday to run some water through her pic line to see if that will help.

Dr. Paul also discussed sedation therapy for Mares air hunger. He explained to mare how most people with respiratory distress like she is experiencing decide that to avoid that feeling, they go on a drip of ativan at a low dose. Once on this therapy, you are pretty much out of it and sleep most of the time. She has said all along she does not want to go that route but after this episode, she listened to Dr. Paul and said she would consider it. A part of me wants her to do this so she is comfortable. Another part does not as i would not hear that cute little voice tell me again, "'i'll scoot over."

May she have a restful and peaceful sleep.


  1. Bless your heart Jeff, may God bless both of you. Your blog is so touching, thank you for sharing your story. Love Gerry Anderson

  2. That Marilyn is so adorable... I'm so blessed by this blog. You have so many sweet moments to treasure. Will you give her a smooch on the forehead for me, Jeff? And I'd hug you if I was there in person. You are both such a blessing in our life and in that of so many others....our prayers are specifically for Mare's peace and comfort around breathing... as well as the tummy pain. Love to you both.JandB