Monday, March 29, 2010

Gonna be a long night!

Well let's see Glenn was up about 1 am and his stomach muscles were contracting and pushing out the meds from the pump. So I called and hospice came out changed the site...Tonight they had to increase the dose then realized that he would run out of meds at that rate in about 4 hours. Soooo I am now up waiting for the meds to be delivered from U of U, I will then be calling hospice again (this guy is gonna hate me) to come and change the bag. The fun never ends! From what I have read I am a bit concerned about how this is going. SPS folks are famous for not being able to have anything like a feeding tube or port because of the muscles contracting and kicking it out- so I am now a bit apprehensive about the whole deal. I guess we will just have to wait and see how it goes.
Parker told Glenn this weekend that if anything ever happened to him that he would kill himself to be with him. This made both of us sick. I tried to talk with him about it and he just told me that he wanted to be with is dad. I asked him why he didn't want to be with me and he said, cause you are not gonna die mom. That was pretty much all I could get out of him..:( I guess I will just keep trying to communicate with him, but that is a lot to swallow when you are 7. :(


  1. I don't even know what to say but I just wanted to leave a comment so you know I am thinking about you and praying for understanding for everyone affected by this.

  2. Hi Christen,
    Not sure if you remember me, used to live in the Huckleberry Ward. I found this site through Aimee B.'s blog. I'm so sad to hear about Glenn and what your family is going through. That last post was very sad. I'm not sure if this disease is eventually fatal, but the social worker in me wonders if the kids would benefit from some type of counseling to help them deal with their feelings, if they aren't already. Maybe LDS Social Services, where they are of our faith. Anyway, just an idea, it sounds like little Parker doesn't quite know how to handle what he is feeling:( My prayers are with you and your family.