April 21/22

This update was sent to me from Mom (Nancy):

"Some highlights from Monday and Tuesday:
Speech therapist Lindsay was a wonderful "highlight" of a different sort. She gave Dad a very thorough assessment and came back with a pad that Dad may be able to use as a call light and also an assisted listening device. She was talking about several things they plan to try toward the goal of Dad talking. I like her energy and ideas.

The OT and PT are equally engaged and came both days. OT sat Dad up as far as he would tolerate in the bed. Both were talking confidently about what they plan for him to be able to do. When the PT was assessing yesterday, she felt a muscle fire in his thigh and so did I! (Everybody stand up right now and do a happy dance!! Nurse's orders! - Flora) 

I met his new LTAC dr. - Dr Krause, and she was in here a couple of times yesterday and today. Took lots of time talking with me and seems like someone who can get things done, saying "I'll make sure. It's my name on his bracelet!" She didn't know what NAVA was but when I explained, she asked Pat (Director of LTAC) and came back saying, "I learned something!" She admitted they are learning a lot about how to care for a GBS patient because of Dad. While I'd rather there be more experience, at least they mostly seem eager to learn. We are getting along great. She said she was on the phone a lot during that terrible night of the bleeding. She said he is doing so well weaning he may not even need the bells and whistles of NAVA. He did 8 hours Monday and the pulmonologist said they should try 12 today. He just hit that! (Tuesday, I'm a day behind posting - Flora)

I told you I found a GBS/CIDP foundation support liaison in the literature they sent. Her name is Sally and she came and visited us today. She has volunteered for several years and has seen GBS as a respiratory therapist also. She can't do that work anymore because she has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and limited use of hands and arms.

JJ spent most of Monday with me and brought lunch. Such good company.  :) (The housekeeper showed JJ the back elevator to the outdoor patio. Yeah for sunshine! - Flora)

There was another gift from my neighbor waiting on my step. Two friends visited Monday and Tuesday.

 Dave Giegler has a new project...he is organizing our storage area in basement especially the train stuff with the goal of getting our storage unit emptied.

Tonight, my Tuesday evening friends gave me a care package with a lime green really soft blankie and socks, a devotional book, and other stuff...and bought my dinner! Blessed.

I'm here tonight (Tuesday) and we are "watching" NCIS.  Heading home soon.

Dad asked for anxiety medicine yesterday and now gets Ativan."