April 10, 2007 at 10:57 pm

Wow, I am feeling much better now that I have people to talk with about this situation. As you all know feeling helpless and powerless can cause ones thoughts to become unfocused. Now that I have some information I believe I can do something. Thank you for the resources related to long term care facilities options in Louisiana. Both places will hear from me first thing in the morning. Julie, my niece, is in a teaching hospital – LSU Medical Center in Shreveport, La. They have cared for patients with GBS-Miller Fisher before and have provided her with all of the standard treatments in order to slow down this disease. So far nothing has helped and she seems to loose a little more ground each day. My main concern today is her breathing issue. The doctor ordered xanax prn for anxiety. Having worked in the medical field for more than 20 years I know that medications ordered prn are not going to be given very often. I did get this order changed to every 4 hours so hopefully this will help with anxiety. Has anyone had any success with nebulized morphine as a breathing treatment? We use this for our hospice patients all of the time and it seems to make the feeling of “air hunger” decrease. What about steroids to assist with breathing as well. This is another drug used in the hospice world that seems to work extremely well for breathing (I know this sounds strange) but it does the trick. My problem is I know what medications work well to treat patients that have a terminal illness but don’t have a clue about curative treatment. One last question, does anyone have a resource where I can find some type of communication board or picture gram? I made a very simple one and requested the nurses to use this to communicate when ever they come into Julie’s room. Julie is able to move her lips and mouth the words “yes and no” so the board needs to be basic. Finally, thank you all for caring and helping me with this tragic event. Our family is devastated and depends on me to help them understand what is going on medically. I am grateful that I can offer the family this type of support but it is difficult to keep upbeat when I have no one to talk to about this. I am so glad you are here to listen and offer suggestions. I apologize for talking so long today; promise I will not ramble on so much from now on. Thanks for now-I will keep you all posted on this journey as time goes on. Faye