Thursday, January 10, 2013

Jedi Master Training Mission: Day 4

I'm just going to come right out and say it.


Here's the thing about hospitals- there is far too much information going around through the ranks that by the time word gets around to the patient, it's not even close to what's really happening. Ever play a solid game of Telephone?? Now, imagine playing Telephone with 44 people. Imagine them all sitting in one ginormous circle, waiting eagerly for the doctor to tell person numero uno precisely what the plans are for patient in room L-616. The doctor leans down, whispers the instructions, and walks away. So begins the game. The only rule? No one may get up to tell the patient anything until at least five people ahead of them have heard the whispered instructions. One by one the information spreads, until all 44 people have heard it, and have individually made their way to that poor, unsuspecting patient.

That's what today was like. With every new person who walked into Renn's room, their version of the story was slightly different. First, we were going home tomorrow. We'd monitor his VEEG one more night, and that'd be it. Then, we were told that he WAS, finally, going to have the MEG done, and it was going to be done ASAP (this was at noon), and that we were going to take his EEG electrodes off, put the MEG electrodes on, and that once the test was over, he'd be sleeping without ANYTHING on his head (meaning we might get to walk to the cafeteria together for a dinner date), and we could go home in the morning! Two and a half hours later, the tech came in, switched the electrodes, and we had twelve people in our room all of a sudden saying different things. We went to the MEG, and came back to find that not only did the electrodes have to stay on, but that they weren't sure we were going home any time soon.

The MEG was hard. Very, very hard. He had to lie there, very still, just like an MRI, only this machine was only covering the top portion of his head. For almost two hours. Both he and I had to be sealed shut in that tiny space. Before we left our room, I was told to remove all metal. So I did, because there was no way I wasn't going to be with him. However, once we were in the room, I actually even had to remove my bra... Intense, no? Renn had a very hard time holding still, as you can imagine. Even Dr. Amazing came in (foregoing her glasses, bra, everything! as well).

She really is Dr. Amazing.

Long story short, folks, it's looking like Renn is having multiple seizures at night, too. Like maybe 10+. This could be far more serious than we'd thought. If the EEGs and MEG cannot find the specific location of where these dang things are coming from, drastic measures will be taken. I will stay here with him as long as it takes... I'm not bringing him home without an answer.

 He's so brave, you guys. I know he's holding all his emotions in, and is standing strong for his mommy. He doesn't often admit when he's afraid. He's always done that. Just like a Jedi. Whenever I've been out of sorts, I've always seen this face grinning in my direction...

He's sleeping quite soundly, as he had yet another seizure right before bed that seems to have knocked the tuna salad out of him. This one was the most different I've ever seen; no jerking, no questions, very little pointing... But his entire body tensed up and he'd grunt as though he were in pain. I hope Dr. Amazing sees a difference, too. The hubs was Skyping with us at the time, and he couldn't believe how different it was.

All throughout the day, I had this song stuck in my head... So, I'll leave it with you. Once again, thank you for your love, support, and prayers. I want this monster gone, too... for my beautiful boy.


  1. Thinking and praying for you. Medical situations suck. Glad you have Dr. Amazing!

  2. Renn truly is a beautiful boy. You are a blessing in his life as much as he is in yours, Bethany.

    May the answers for a resoulution be revealed soon!

    Sending light, love, and hugs!!!!

  3. I hope you get answers soon...and, yes, thank goodness for Dr. Amazing.