We obviously survived the night at the hospital. I stepped outside my comfort zone and did the unthinkable (in my book). I begged Lonnie to do it but he refused. It was either me stepping outside my box, or suffering with Tweedle Dee and Tweedle Dum all night.
Regardless, we had to anyways....5 hours into the 24 hr. EEG I was going nuts with the room mates. Frustrated, is putting it mildly.
Daniel wasn't happy, Lonnie wasn't happy...I WAS NOT HAPPY. I don't think I've seen 3 people eat potato chips with such gusto as they were. It was obvious that no one ever taught them to chew with the mouth closed. I need to tell you these were not children. The guy getting the EEG was 16-18 yrs old. The older brother was in his early 20's and then the mom who couldn't control either of them.
So I came up with this thought....we already knew our course of action if there were seizures on this EEG. We would be starting the ACTH. So it was 4:15 p.m. and I ran to the neurology department and found the head nurse for Dr. C. Explained that no one was happy, could someone possibly go upstairs and look at what they had so far for Daniel's EEG. If there were seizures, unhook him and send us home there was no use in suffering for another 19 hours.
To my amazement, she didn't laugh in my face (see Lonnie I told you!). She said, let me see what I can do.
Less than 30 minutes later in walks a group of neurologist. I have to tell you at that point I was regretting asking because I was afraid they were going to tell me he did indeed have a seizure and send us home. Double edged sword...I wanted to go home, but I didn't want to find out Daniel was still having seizures. So for a brief minute or so, I wanted to tell them to back up out of the room, I wasn't ready to hear the bad news.
Good News/Bad News: Good News was that in the 5 hrs that Daniel had been hooked up, there were no seizures. Bad News, we had to stay the rest of the night with the room mates. But it made it a little more easier knowing he hadn't had any seizures yet.
So today I waited for the phone call/email from the hospital. They know we are anxiously awaiting the results. All of a sudden an email comes in with the Subject: Daniel EEG and I froze...I didn't want to read it....I was scared. Just stared at it for a couple minutes
Lines in Blue are from the nurse - Lines in Red are my thoughts
Ok – deep breath – (THIS IS WHERE I STARTED BRACING MYSELF FOR THE WORST NEWS)
no spasms!!! (YEA!!! Do the celebratory dance of joy) So - the vigabatrin is working.
There was a lot of interictal(between seizure) activity still – but that’s OK, as long as there aren’t any spasms. (Ok Stop Dancing now I'm confused....interictal activity (between seizures)...WHAT SEIZURES? I thought you just said no spasms. Does that mean he is having another kind of seizure? Care to explain to me in real simple terms what interictal activity is?
And – you are not pushy – just concerned, and I’m glad when I can relieve that even a little bit
(She said that because I apologized for being pushy and having someone come up to check something special for us.) I actually found out that she went and grabbed one of the doctors coming out of surgery and asked him to come check Daniel's EEG, he said fine but only have a few minutes before going back into another surgery. Pretty cool eh? Now I don't expect this to happen all the time, but the worse that could have happened when I asked was she could have said no. No actually she could have laughed at me....that would have been worse cause Lonnie wouldn't ever let me live it down!! But because I did do it, and got someone to look........I now rock, and I throw it in his face!! LOL
She definitely rocks in my book! She is one helpful person, she listens when you cry, she tells you things straight out and she is caring about my child. I appreciate that she is on our side. Now I just need to figure out what the one line means and we are good to go.