It's the "end of the line" for Beth. After recovering well from her pneumonia last week, she took a turn for the worse towards the end of the week. Her fever returned, and her left lung started getting filled with mucus again.
At this point, the doctors say that medically, the only thing to do would be for Beth to get a tracheotomy, which would allow the mucus in her lungs to be drained at regular intervals. In addition, she would probably need a G-Tube , so that she could get food into her body.
So, to take that route, she would have a tube in her throat, and a tube in her stomach, and that would probably be the new "status quo" for her.
Consequently, my parents have made the decision not to go this route, and to let nature take its course with Beth. She has already lived far longer than an average Rett's girl lives, and up until this point, her quality of life hasn't been too bad. But if we kept her a live through artificial means, it would most likely be quite painful for her, which to but it bluntly, Isn't Good.
Her doctor thinks that by avoiding the tube route, she won't live longer than a month. My parents are going to bring her back home, and bring in some hospice care. So, at least she will be in her own, familiar surroundings. And it is our hope that she will experience little pain, and will have a peaceful time until the end.
I have made the decision to cancel my trip to Japan, and I will be going to work on Monday in order to negotiate some form of leave. I may work from Illinois, we'll see how it goes. I expect that I will be back in Illinois by the middle of next week, for a stay of indeterminate length.
-Andy.
We're thinking about you and your family.
Posted by: Jeff Puckett at March 15, 2004 05:37 AMAndy-
Sorry to hear about Beth. We'll keep you in our thoughts.
:-(
Hugs all around - don't know what else to say.
Posted by: Mike Pirnat at March 15, 2004 06:52 AM