48 hour EEG result

The past two days have been an absolute blur. I'm overwhelmed with the amount of support, love and prayers from all everyone, from my family to friends, and friends to friends of friends or just plain followers, Thanks you. 

Karsen and I left bright and early at 6AM to head for our rush hour traffic drive to the hospital for his 48 hour EEG. We hit a fair amount of traffic but still arrived 30 mins ahead of schedule. The nurses got us set up in our room right away. I wish I would have taken a little more time outside before rushing into what felt like quarantine. Our two nurses we first had were really sweet and helpful. Our first epileptic specialist we met was not so nice. Well, maybe I just have a sour taste in my mouth about her, I guess she could have been nice, but I made up my mind 5 minutes after meeting here... I don't like her. We went over Karsen's history and one question that always comes up and I hate answering "is he up to date on all his vaccines?" Ok, before I get going on a tangent on my beliefs, doctors, research.....blah blah blah, let me keep this part short as I can. To each their own. You are your child's parent, you make the decision whatever you see fits best, and have the best outcome for your little one. With that said, Karsen hasn't had any. I can make a whole long blog post on vaccines but quite frankly, I don't want to. It's just like politics, you're not going to make me vote for a different president just because you put up a few pictures on facebook and I'm not going to change your mind about vaccines after I would tell you how I feel. again... not getting into. Ok, back to the woman I don't like.... When I told her Karsen didn't have any she looked at me like I had a third eye, asked why and then proceeded to tell me about a case in their hospital where a baby died from meningitis even though they had the vaccine.... her point she was trying to make I don't think came out right... Oh well. Moving on. We talked about Karsen's constipation, (sorry little man) and his drooling, and eating delay. When I told her he wasn't having issues until the seizures (with the feeding) she told me "that has nothing to do with the seizures, that's the massive amount of brain damage he has dear"..... eh hm! What?! Try that again my DEAR?! Have a little tact for crying out loud. Of course I started crying, I hate that saying "brain damage" and then she had to go and add on "massive amount". So, can you see why I don't like her? After we were done with her we met with our tech who was going to put on all the leads on Karsen and a secondary person to distract him with a fancy schmancy ipad ap. ha! Good luck lady. He doesn't even like me putting his eye patch on, you think an ipad ap is going to help? I felt awful for the two women and of course for Karsen. He screamed the whole time. I think the second girl figured out fairly fast, the ipad wasn't working. Thankfully he stayed up the whole drive there and was super tired from screaming and crying he fell right asleep. This 48 hour EEG was a video EEG. So, anytime I moved Karsen out of the crib I had to readjust the video camera so it had him in sight 24/7. That was fun! *sigh* Looking back now, I'm so glad it's over. Karsen did really well, slept well, ate well, and was pretty much happy the whole time. We brought some of his current therapy toys/tools and worked on a lot of bench sitting while we were there, play/therapy was hard considering we were in a hospital room so he couldn't just play on the ground, we ended up playing on my pull out bed most of the time (which was quite slopped and not very even since it was all pushed together cushions, but it worked). Every nurse in our department kept coming over to see the "cute baby" and he lived it up each time a new person would come in. Huge grin, every now and then squeal. Some of them came back to check on him even though he wasn't on their patient list. I don't know where he gets his social side from ;-). On the plus side, I don't think Karsen has EVER gotten that much undivided attention from me. No laundry, no dishes, no meals to make, no bills to pay, no big brother, just me and my little man. The next morning we met with the secondary epileptic specialist. He went over the results with us from the last 24 hours, and told us that he got enough information from 24 hours, there's no need to stay an extra day. WOO HOO! (Keep in mind neither of us left the room, not once) The specialist told us Karsen's EEG came back abnormal (no surprise there, his will most likely always be abnormal), this doesn't mean he's having seizures it just puts him at a much higher risk of having them than "normal" people. The EEG came back clean of no seizures, that's right NO SEIZURES! The dazing, and weird behavior (easiest way to put it) is all most likely a symptom of his medication he's on. He also told us he was shocked Karsen's brain waves weren't as spiked as expected. With the amount of damage from his stroke, and his infantile spasms he expected to have to sift through a mess on the EEG. That was also good to hear. This in now way means he'll never have another seizure. He could have one tomorrow, he could have one 10 years from now, or he could never have one. You just never know. Our plan of action? Tomorrow morning, I'm going to talk with Karsen's neuro to go over everything one last time and then, hopefully, start tapering him off his last and final medication. Dare I say he maybe medication free?! Really, our appointment couldn't have gone any better. We got to leave right after, didn't hit any traffic, picked up my big little, and had dinner with my hubby. *sigh* It feels so good to be home, good to have closure, to know that he isn't have any seizures at night, or nap time when I can't watch him, I feel like I can put this chapter to rest. 

So, there it is. Our 48 hour EEG turned into a 24 hour EEG with really good results. So thank you again for all of the support and prayers. Oh and the many texts from my close friends and hemi mommy friends. You guys all kept me sane. 

Wiped out and ready to fall asleep and yes I brought all of his bedding so he would feel like he was at home. It seemed to work for the most part. He slept 7-5am (but I think he would have slept longer had it not been for me being up already from sleeping on that hard as a rock pull out.

That blue bag and cord had to go everywhere with us, and Karsen wasn't aloud to play with it, which of course he therefore wanted to play with it all the time.

It was really hard for me to not watch the monitor all day. Pretty neat to see how the brain reacts and how I could tell if he was a sleep just by looking at it.

 Excited to get all the leads taken off.

 What a sticky mess! (after one shower it's still in there :-/) Might have to rub his head in some baby oil tomorrow. 

Oh, and I did not bother eye patching him while we were there, he had enough going on and I didn't have enough stuff to distract him from crying about it.