Slow progress

We have been on the new regimen with the addition of the increased Klonopin and Tegretol for a couple of days now, and we have definitely seen some improvement in her movement disorder and agitation.  I would say we are about 50% better than we were just a week or so ago.

We are using the chloral hydrate less, maybe 3 times a day or so.  Today we went 8 hours and 13 hours in between needing the chloral.  When we do use it now, it isn’t so much the brainstem agitation, it is the agitation because she is just so exhausted and wants to try and sleep.  We have been using Benadryl a bit more often to help with this, but it has been hit and miss with its effectiveness.

On a positive note, she has fallen asleep on her own three of four times now.  Granted, the sleep only lasts between 30 minutes to an hour, but it must be a good step.

She is a bit more comfortable, her movement disorder still bothers her.  It is not anywhere near as violent as it had been, but hopefully there is still room for improvement.

Even so, she is still not really aware.  The only smile I have seen in the last 48 hours is one single group of smiles she had while she was sleeping.  It only lasted a few seconds, but I wish I could have captured it.  But other than that, not much interaction with us.

I think I am going to see if we can get her eye doctor to make a house call.  I just need to know if she really can’t see us anymore or if her muscles controlling her eye movements are basically shot.  It kills me when she just stares straight out without any purpose.

Also, I’m going to talk to the doctors about perhaps decreasing one of the earlier sedatives (phenobarb perhaps) to see if we can get more awareness out of her without sacrificing the comfort we have achieved so far.  We still have a way to go for full comfort, but it is less stressful for us now that she is not as stress out all the time.