Surgery...sometime today

They are trying to find a spot for her on the surgery schedule.  We are hoping sooner rather than later...her feeds have already been off enough time that she could go now.  So the longer we wait, the longer we have to watch her for low blood sugar and she will be hungry.

I still do not know the actual plan of what they intend to do in surgery.  And they may not know until they get in there.

She had some shakiness last night, I am assuming due to lowering the baclofen.  We gave her 1 dose of oral baclofen.

She had another fever and another ice bath last night.  We have been doing them for fevers over 99 F (her typical temp is 93-95.5F).  I consider 96 or 97 to be a low grade fever and 99 or higher to be a full-on fever.  Since she keeps her head flopped to one side the ear that is down (on the pillow) is always warmer.  I only take the temp in the ear that is up (which would be the colder temp).

This is how I typically do ice baths... I get a bucket of ice water and a bunch of washcloths.  I put chux (disposable absobant pads) under her.  I get the wash clothes wet and squeeze about half of the water out.  I place a washcloth on each thigh, 1 on her abdomen, 1 under each armpit, 1 on her neck and 1 on her forehead.  I set an alarm for 10 minutes and watch netflix in between.  When the timer goes off, I remove 1 washcloth at a time, get it wet in the ice water, squeeze it half way out and replace.  I recheck her temperature about every 20 or 30 minutes.  When she gets down in the 95 F range I remove the washcloths and the wet chux.

Last night it was really smart of her.  One time when I was watching netflix she did her fake hiccups, which sometimes means stop/all done/no.  We are trying to reinforce this behavior by stopping whatever we are doing when she hiccups.  I went over and checked her temperature and lo and behold it was in the 95 range.  She was done, she was not hot anymore.

Another really cute thing she did yesterday...She has had this sore underneath her tongue for several days now.  The resident examined her, but did not look under her tongue.  The resident started to turn away and Ellie kept sticking out her tongue as if to say "Hey...you forgot to look at this other thing that is bothering me".  I pointed it out to the resident and she said "You're right Ellie, I forgot to look at your tongue."

What a smartie!

Can you imagine not being able to say any words verbally, having very little ability to vocalize, and not being able to use actions to point or show what you need?  She does what she can and she really communicates a lot, you just have to be in tune and attentive to know what she is saying.

My friend's son that had to have his baclofen pump pulled suddenly (without time to wean him off) had to go to ICU overnight to watch for withdrawal.  I do not know if this is standard protocol or not.