One long night leads into one long day

So after I blogged last night... Kahlai feel into what i was told is an Absence seizure for over an hour... actually was an hour a half... one for an hour, then a couple minutes he responded to me, then another 15 minutes, then responded, then 10 and he passed out.

I was so frustrated about the pedia sure and the exhausting day that I just put the side rails up and watched him this time. The absence seizures aren't scary for him, he is very content and it almost seems as though he is PURPOSEFULLY ignoring you. I swear as I watched him last night, he reminded me so much of a grown man tuning out his mother and his significant other! lol.

He would just look around... it was like he could NOT hear me. I called his name and asked him questions for 45 minutes. I called the nurse, she flashed a light in his eyes and around the room like a disco ball and he did not even respond to the light. He was checked out of this world and into some place that must have been more entertaining because he started talk ing to himself. He was mumbling something I could not understand, but nonetheless was communicating with people and laughing. I will just call them ANGELS.... and hope that these absence seizures were brought on to give his mind a rest from the more painful or scary seizures he has been having.

So I talked to the mom next to me until after midnight last night.. we talked about this and that and it was nice to just talk about something else after having a melt down. I will stay strong but I must tell you... it is not easy to fall apart when your child is.... well.... no longer acting like your baby... but of something else... or someone else.

I miss Him! I miss his laugh and his silly nature, his little games he would play and dare I say it.... I miss his energy!

So we did not get ANY sleep last night. I was so frustrated and we could not figure out why he would not sleep. Woke up at 3am (not too long after his dad got here...hmm) and had the hardest time getting comfortable. Just when i thought he was comfortable, he would be so tangled up in his IV cords!

Today i am tired.. and today is the shift change so we are being assigned a new neurologist.... Dr. Williams... so far Kevin seems to think it's a good fit! lol... silliness.

So we are not sure what will happen next. We just have to sit here and wait some more to hear what the new epileptologist's course of action will be.... and then go with that I suppose.

Somewhere in my heart of hearts I wish we would have taken him to St. Joe's ER to begin with on Sunday.... I just still don't feel right about that. Oh well, we are here now and hopefully we can get some sleep.

God Bless you for reading my really long and emotional blogs... Here's a BIG HUG AND KISS FOR YOU!

RRRRRRAHHH!!!!!!!
MMMMMWAH!

I'll post later tonight about what the new doc says he wants to do about Kahlai.... but for now I'm gonna wait for Amy... have some girl talk and some much needed coffee... and then nap as much as I can today.