Still here

February 2, 2007 at 10:43 am

Ok…today is Feb 2.

As a brief recap:

My mom went into hospital on Nov 11, 2006 with GBS/Miller-Fisher. Stayed one month in ICU completely unresponsive and on vent.
On Dec 11 was moved to LTACH, still on vent and still unresponsive.
Approx Jan 4 or 5 she opened one eye and was able to move her head and answer simple questions with nodding.

She now has both eyes open most of the time. (she seems unable to close them and one is really red and sore looking) She cannot move any part of her body except her head and eyes.

No vent weaning or PT has been possible yet because she simply has no strength or muscle control.

I have been having issues with the Doctor at the LTACH. Apparently I ask too many questions and have been told by her to “stop harrassing her staff”. That is just infuriating. When I call to ask how she is doing, I am usually answered with a one word response. I’m sorry – but that’s just not good enough.

The only sort of therapy she is getting is sitting in a chair for 1-2 hours a day.

There is one RT there that is pretty nice and actually did some CPAP trials on the vent. My mother was able to breathe on her own for about 10 minutes. But I’m sure it wore her out because she is not strong enough yet. But at least it’s encouraging that she can breathe on her own.

I have read so many messages on this board and most of you are SO LUCKY to regain your strength so quickly. A week here, maybe 3 weeks there. Try almost 3 months now of being totally paralized except your head.

This must truly be The Worst Case Ever. And I feel totally helpless. I don’t know what else I can do.

Oh…also they want to move her to a nursing home in the next week or so.