Checked in Monday morning, took Aiden off of all of his anti-convulsant medications, and sat us in the bed.
Aiden looked so funny with his leads all over his head. Sadly, the only picture I got was after the put a bandage wrap on the whole thing to keep the leads on there better. They don't allow cell phones to be on in the room so the fact that I got any pictures was contraband.
We noticed that Aiden was completely out of it for the entire first 24 hours. They told us later that it is because of his pain meds that he is having these narcoleptic-like episodes. Basically, they claim he is stoned out of his mind. Ha ha!
The morphine was also to blame for some of his jerking and spasming, apparently.
I'm not sure that all of this behavior is to be blamed on the pain meds, he was also having these episodes before he had morphine or hydrocodone but they were less severe and less often so I guess I will be happy if we just get back to that place.
Anyway, no seizures were happening. So we played PS3 games. We started with Pinball for the blinking lights. Sure, this will bring on a seizure, right?
No. But we did replace all of the high scores. And I don't think anyone will ever catch us. On Medieval Madness, we scored 49 million points in one turn. That's not an exaggeration, it's a fact. 49 million points.
Sadly, it was the most exciting thing to happen all week.
Because Aiden continued to be unhelpful in the seizure department, in spite of flashing lights on games, sleep deprivation, high levels of caffeine and sugar, strobe lights in his face, and forced hyperventilation, the doctors wanted us to stay until Saturday. We politely declined, having decided that our sanity and our backsides could not handle one more day of sleeping there. A was confined strictly to his bed and while I was able to leave the room if I needed/wanted, the bed was basically my only choice of where to sit in the room. And they both sucked.
So we busted out (with doctor's permission) of the VA on Friday afternoon. We have a new anti-convulsant for the next 3 months, a follow-up scheduled for then, and no diagnosis. Which is the best thing that could have happened, really. They are looking to chalk it up to the 'perfect storm' of stress in December, and if he remains seizure-free for the next 3 months, we will wean him off of all the anti-epileptics and officially close this door in our lives.
Every one of those wires goes to a different spot on his head. |
Wish you would have gotten a picture before the bandage went on! That is A LOT of wires!
ReplyDeleteI love you lots holly, glad you are headed home now!
--Shannon