I'm honestly not sure how to feel about it. On one hand yes I think it's great they didn't see anything.. but on the other hand, we were there for three days.. we put Joel through a very stressful situation.. and they didn't catch any of the staring episodes we had been seeing at home. It gave us a little peace of mind in knowing as of right now his seizures are still controlled--from what the doctors saw, anyway.
Even though the doctors told us Joel's seizures were controlled, a neurologist--a neurologist we had never seen before our hospital stay, by the way--decided he wanted to lower Joel's seizure medication to cause him to have a seizure so they could see if he would have a staring episode like we thought we had been seeing. It made absolutely no sense to me why someone would want to cause him to have a seizure if he wasn't having them already. We were on day 2 of our stay in the hospital when he came in to tell me this, and I just so happened to be alone because Jer couldn't take off from work. All the stress & worry built up inside of me and exploded into a huge meltdown of tears. The doctor wasn't compassionate about my concerns and fears. He simply looked at me and said "why are you crying?" I wanted to scream at him. He just told me he wanted to lower my two year old son's medication TO CAUSE HIS LITTLE BODY TO HAVE A SEIZURE even though the VEEG shows that Joel isn't having any seizure activity, and he wants to know why I'm crying. Really?? Our regular neurologist made it clear before we went into the hospital that he didn't want to touch Joel's medicine until we got the results back from the VEEG... And here this doctor who we just met is going to play with his medicine and put our little boy at risk of having a status seizure. No thank you. So, the jerk neurologist said ok and sent us home. I understand that in some cases the neuro's do lower medicines to cause a seizure... but most of those cases in TSC kids are when the neurologist is trying to pinpoint which tumor is causing the seizures so they can perform brain surgery to remove the tumor. We were not in that situation. We were simply there to see if Joel was having seizures while on his current medication. We were not there to cause them. I can understand if they did see something new that concerned them and they said ok we need to increase his medicine.. but that wasn't the case either.
*What would YOU have done in our situation? Do you agree that we made the right call?*
Ok, moving on...
On Halloween the hospital staff dressed up in fun costumes and went around to each room and gave out goodies. Joel's favorite was a hospital worker that was dressed as Jessie from Toy Story and had a labradoodle that was dressed as Buzz Lightyear. (I immediately told Jeremy we have to get our sweet boy a labradoodle. Look how cute they are together!) Everyone stopping by made our day brighter and I wish I could've hugged every single one of them. Seriously, it was the only time I saw Joel smile during the 3 days we were there.
Before we had to schedule the VEEG we had planned to take Joel trick-or-treating and let him dress as Buzz. Well, it obviously didn't happen the way we planned.. but we decided to still buy Joel the costume and let him dress up for his uncle's Halloween party. His whole face lit up when he put on that costume and saw himself in the mirror. It was priceless! Jeremy and I went as Mr. and Mrs. Potato Head.
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