Beautiful Kate

Hello to all!  First of all I would like to thank everyone for your prayers and thoughts and kind words and offers to help, it means more than words can say.  We are home now after only 24 hours at the hospital, which I'm SO thankful for (48 would have been a bit much). 
The summary:  

We took Kate for a scheduled sleep deprived EEG on Monday.  Kate has not had any seizures in almost a year and so we thought this visit would reveal normal results, and we would be finding out how to wean Kate of her seizure medication.  Well, that was the opposite of what happened.  We were told that while Kate slept, her EEG showed spikes that are typically seen in epileptic type seizures, and that they wanted us to come in as soon as possible for a 24-48 hour continuous EEG study.  Ever been hit by a ton of bricks??   We were told that a private room was available for the next day, so we took it.


Kate and I arrived at the hospital on Tuesday morning, she got all hooked up for the second day in a row (and was the BEST KID EVER THROUGH ALL OF IT!), and the testing began.  Twenty four hours later I was told the following:  The testing revealed Kate to be having the same abnormalities that were seen during her 45 minute sleep deprived EEG.  Kate had some abnormalities during the day, but the main bulk of seizure activity was seen while Kate was sleeping.   The type of seizure activity observed looks a lot like "Electrical Status Epilepticus during Sleep" (ESES).  The concern is whether or not this type of seizure activity is impacting Kate's brain function during sleep when a lot of learning and development takes place.  This type of seizure can be treated/controlled with a valium treatment given at night (did someone say Valium??  I could have used some Valium...oh, but we're talking about Kate), however, since Kate appears to be developing normally, the team felt comfortable with letting her go home without starting that type of treatment.  The plan as of now is to keep Kate on a higher dose of her current medication, and to have a neuro-psychological evaluation done as soon as possible.  Neuropsych testing will give us a much more detailed look at Kate's overall development i.e., language, cognition, motor skills etc.  If the neurologists see deficits in her development, that are typically seen in children who have ESES, then they may suggest additional medications at that point to further reduce seizure activity.  

For now we will watch Kate daily and look for any signs of lost skills/regression or for any type of seizure activity.  In addition, we'll be booking a neuropsych eval for the very near future as well as scheduling ANOTHER sleep deprived EEG within the next few weeks to see if the increased dose of Kate's current medication is helping at all with her nighttime seizures.

Oh, and one more thing (because it couldn't possibly be MY LIFE if there weren't ONE MORE THING!).  After I said all my goodbyes and thank yous at the hospital, and paid for parking, and took the elevator up to the 4th floor of the parking garage, I noticed that the back door of the car wasn't completely shut.  I thought "hmmm" and then "oh crap, what if the battery is dead??!!"  I got Kate buckled in, put all our luggage in the trunk, got myself in the drivers seat and I turned the key...aaaand the car was dead.  Yes, the battery was dead.  I just sat there more numb that you can even imagine.  I then got out of the car and flagged down the first car coming by.  It was a man and a woman and as I was asking them if they could give me a jump I TOTALLY burst into tears (honestly, this was the straw that broke that camels back).  I blubbered about Kate, and being in the hospital with her, and the woman just smiled and said that she understood completely.  Then these two people pushed my car backwards and into another parking spot so that they could reach the cables from their battery to mine, and my car started.  I found out that the man was heading to a follow-up appointment for himself at the hospital, and I gave him a hug and thanked him and thanked him.  When I got into the car I thanked God for those people because they were like angels to me.   The LAST THING on earth I needed was to have to call and then wait for triple A in a dark parking garage with my overtired 3 year old daughter. 


That's the story.  I apologize if there are tons of spelling and grammatical errors or if any of it was totally unclear.  I too am sleep deprived and looking forward to a (hopefully) NORMAL night and day tomorrow.  Thank you all again SO MUCH!!!!