Friday, June 26, 2009

Where we are at...and a bit of my philosophy of the day

Hi Everybody,
We have had several calls today, so obviously the word is spreading that we have contacted Hospice for help with Heidi and are now moving into another phase of care for her. Hospice is certainly known for "end of life" care and though we have reached out to them for Heidi's care, we don't necessarily feel like anything is imminent. Hospice cares for people when their "treatment options" have run out. With ALS, there never even really has been any treatment options, so I guess technically, we could have contacted them sooner. The reason we reached out to them this week is that H has been having some trouble with her breathing and were concerned with C02 build up in her bloodstream, especially in the am. I personally don't know what to do to manage that and the in-home care that Hospice provides really has helped to ease my mind with how I can make sure that H is comfortable and not suffering mentally or physically. They delivered an oxygen compressor today and though I have yet to convince H to use it, I'm comforted for its presence if we were to need it.

Nobody can really say how much time we have left with H, or anyone else for that matter. She could outlive me, or anyone reading this blog. All I know is that we can live every day that we have on this planet and do our best to take care of each other as best we can. We can strive to do the right thing and try to take actions that we would hope that others would take for us.

We can try to look at ourselves through the eyes of our parents and our children and hope that we would see a vision of reflection or emulation that brings positive feelings of pride or aspiration and above all Love.

We can try to look at ourselves through the eyes of our friends and hope to see bravery, unwavering loyalty and strength of character and the love of the family you choose for yourselves.

We can try to look at ourselves through the eyes of strangers and see hope, charity, generosity, kindness and of course, the common denominator, Love.

If we can live our lives in a way that these things would be reflected in they eyes of those that look upon us, we would all be great indeed and the world would be a place with much more of what we all really want.

Good night my friends.


  1. Hi Bill,
    I am contacting you this way because I have lost your email address and didn't know if you were up to a call. My dad had his CO2 build up to 120 (more than 4 times the normal levels) in 2007 and we have played the games with the RTs and pulmonologists until we got every answer and option that there is. There ARE options, not sure if you (or more importantly, Heidi) would be open to them, but if you have questions, I have answers. I also have contact information for an excellent pulmonologist who actually cares more about his patients than the $$ figure he sees next to our names.
    You have my email and my phone number. Call me if you want information.
    Also, I know that one of the things that goes with treatments (like ventilators) for breathing issues is inability to speak. My dad just got a new augmentative speech device that he can operate with his eyes, so the one that operates with hands is up for grabs. It's a Dynavox and its fantastic. I am donating it to Rocky Mountain ALS and already told them that if Heidi wants it, she gets first dibs, so if you want it, call Suzanne. They are picking it up next week.

    Anji Wilson

  2. Bill and Heidi,
    You and the girls are in my thoughts and prayers. Your blog is awsome. Thank you for sharing. 3 1/2 hours is a low estimate, but, Bill, it is so worth reading and very insightful.
    God Bless you.
    Eileen H