Once a week we are going to test her baseline but with the understanding that her home monitor cannot tell us the "quality" of the data (they can in the fancy lab) - e.g., sometimes she sets if off by moving around. We are also going to keep the O2 tank and supplies for when she has a cold or any other indication that her breathing is not 100%. I'm also going to keep a close eye on her energy levels (one immediate benefit we saw when she first when on O2).
For the last five months we have been putting the nasal cannula over her head, leaving Duoderms on her pretty face, listening to her (rightfully) complain about the arm restraints she can't pull off in the morning, the beeping (oh, God, the beeping!) and it seems unreal that this is becoming part of Penny's medical HISTORY.
It's making me a little weepy.
P.S. Husband said that Penny kept wriggling her toe where we usually put the monitor probe...looked up at him...and smiled. Damn, weepy again.