Sunday, April 3, 2011

All Day Vent Free!

Hope has made great progress on her ventilator weans. She is now off of the ventilator all day (even when she naps). She is still on it at night so she can rest without worrying about working to breathe. The freedom is so wonderful! (Now if the weather would just warm up already so we can get outside!!)

We went this past Thursday to the neurologist to follow up on the video EEG that Hope had a couple of weeks back. They determined that the jerking movements we were seeing are indeed seizures. This wasn't really a surprise to us - we fully expected to get that news. They've started her on a new drug that will hopefully keep the seizures from happening. So far it seems to have done the trick She's been on the new medication about 3 days now and we haven't seen the jerking movements at all. She will have a follow up EEG done in about a month to see if that shows that the seizures have stopped.


  1. I'm so happy for her - and for you!! I agree, warm up already weather! Putting on all those coats gets ridiculous. Go Hope!!

  2. YAY Hope! Great news!
    Love to all of you,
    Carol Z.