I apologize for the lack of updates...blogger was having issues last weekend and not letting me post updates. It seems to be fixed now.
We are home. You probably guessed that.
We came home Mon or Tues...the day after she spiked the fever...whichever day that was.
The good news is her heart-rate has been below 100. This means she is not in as much pain any longer. I attribute it to time (since surgery) and increasing her baclofen pump settings.
The bad news is it has been way below 100. This means that she is has been getting cold this week. Which means that her heart-rate drops. It has still been OK. Nothing too scary.
Her temps have hit in the 91 F range several times this week and 92 F range several times. These both require warming up with either an electric blanket or a warm bath.
A few nights this week she has been dropping her Oxygen sats into the 70's (it should be above 90). SHe has a slight stuffy nose. We have increased the time on her wiggly-jiggly from 20 minutes twice a day to 30 minutes twice a day. And we are now suctioning her morning and night whether we think she needs it or not...this is in an effort to #1 clear the gunk and #2 get her to cough...that keeps her lungs clear.
Last night she dropped her sats to 24. Her lips were blue...this was with bi-pap on breathing for her. I don't know if it was a seizure or what. We cranked up the O2, yelled at her, shook her, propped open her shoulder blades, put mentholatum under her nose, changed head position, etc...it finally came back up after what seemed like forever.
Jason and I are supposed to go out of town this weekend...why does this always happen?
I guess I better call the sleep Dr. and neurology.
She does fine with her O2 while awake.
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