Well it was rough, but we made it through the MRI amd VMR (Video EEG). I heard from the nurse today and she said: MRI looks good. Multiple tubers, but stable since the last MRI. Ventricles normal. Video EEG also looks good - occasional spikes but no seizures, clinical or sub clinical.
This is great news. This medication is amazing. Bladen went from having a horrible Video EEG and talks of possible brain surgery to a practically normal EEG!!!
The tests were exhausting and very trying on me. With the video eeg, they put leads all of his head and wrap it with gauze so he won't pull them off. Well, Bladen was just awful - a kid I had never seen before. So bad, I cut the procedure short a few hours because we just couldn't take it anymore. Well, when they took the leads off - he had huge bumps all over his head. They wrapped him too tight. So no wonder he was so miserable, he was in pain. We have never had this problem before, so I was sure to let the hospital know. Bladen can't tell me it hurts, I should have known, and I'm still pretty torn up about it.
The MRI was pretty bad as well. They have to sedate him and they knocked him out and then 40 minutes later he finally went in. This means they had to keep giving him more sedation. Afterwards, he woke up, had a drink and we were on our way home. Well, he was so drugged and didn't like it, he was flinging his body all over. He is no longer in a 5 point harness because he outgrew it, so he is in a booster. Well as I'm going down the highway through Detroit, I look back and don't see Bladen. He is on the floor of the car!!! I had to pull off the highway and into some neighborhood that was pretty questionable to put him back in. I was so frazzled, I missed two exits on the way home and had to keep turning around.
Once we got home, he slept for several hours, but then woke up. Russ was at work, so I was home alone. Bladen wanted to play - but he was literally drunk. He couldn't walk, so this ticked him off. He went face first on the tile of our fireplace. He busted his outer lip and inner lip - blood everywhere. I get the bleeding to stop, but I had to hold him because he was literally hurting himself running into everything. So here I am sitting on the floor of our kitchen, holding a 2 y/o that doesn't want to be held. He's kicking, head-butting - seriously a kid I don't even know and don't ever care to see again. Meanwhile, Reese, is getting upset because he is upset and I can tell she is scared - so she wants me to hold her too!! I finally broke down and told Russ to come home....but he called his parents and they came over. By the time they got her, of course all was calm. But they could see the bumps, busted lip - it looked like I beat him.
Bladen was great once his grandparents were here, he even cuddled with them - which he hardly does.
Have I mentioned that I'm pregnant and have awful morning sickness???
Thanks goodness I don't have many days like this :)
Shannon
