Learned something last night

I have to tell you, if you have to get a Video EEG sometime, then you should not wear dark colored clothes at night. Sleeping in a hospital room with probes on your head connected to wires while being watched on camera 24/7. The lights always have to be on all the time so the cameras can see you. The dark clothing makes the dim lights hard to see you, so the lights cannot be lowered. Bright lights! Bright lights!

Day 4

It has finally hit me: I am bored out of my mind with sitting in this room and doing nothing at all. Nothing new happening today. More Chipolte from my awesome wife.

Still no seizures so far… Just bugging the shit out of the nurses while they do the same to me.  🙂

Day 3

Still here at KU Med Hospital.
Room 8802.

Talked with my doctor this morning and he asked if I had any seizures yet. Nope. He told me not to worry about it. Might have to stay here for up to 10 days to get the seizures that are needed. Today he’s having me take half my meds as usual. Hope this starts my seizures…

Finally got a sponge bath. 🙂 The young nurse came in and asked what kind of a bath I wanted; warm wet towels or some kind of blow up tub (I think that’s what she was describing). I thought I’d be good and just wash myself with the towels. I did get cleaned up and put on clean clothes. Oh, this feels so good.

Well, I did something stupid today. I was hot headed and just thought I could stand up and use the bathroom myself. Not supposed to because I might have a seizure and fall, but I thought I could still do it. There’s a button strapped to my bed’s side guard thing that I have to press when I have a seizure. At that time, all the nurses outside will (literally) run in my room to inject me with the fluid for the SPECT scan. So, I wanted to use the restroom myself and I carefully unhooked myself from the bed and lowered the side guard. Well that hit the button and started the alarm to have the people run to my room. I held up my arms and apologized for hitting the button. They were laughing in the hallway after that. One of the nurses fell head first to the ground when she jumped up to run. They said it was good practice for them, BUT I CANNOT USE THE BATHROOM MYSELF.

For some reason, they put another camera in my room that is pointed to my bed, just like the first one. Don’t know why. Maybe they will watch me more carefully and make sure I don’t leave the bed??  😛

Okay okay okay… So when my friend got here, I needed to use the restroom again and I told that person to be careful because I set off the alarm last time. What happens? We set it off again. Again the nurses were there in a flash. Again I apologized. I think when I finally do have a real seizure and press the button, they will be thinking I accidentally hit it again. Hope not.

Still haven’t had any seizures. Bummer. :-\

Day 2

Well, not a whole lot different today than yesterday. No seizures yet. The doc today said he wanted 5 or 6 before I leave. I did happen to hear the alarm button pressed for another room. These nurses run fast when that happens. They need to get there quickly so that can insert the substance into the body to get ready for a SPECT scan.

These student nurses are nice to flirt with.  🙂

I plan to stay up as late as I can just to help get myself to have a seizure. Hadn’t been working hard enough on getting seizures. Need to work and study more.

I have these comfortable things on my legs that inflate and deflate with air. I know they have a real purpose, but I just think it feels good on my legs.

Guess I’ll just lay here like I have been since yesterday and watch TV all night…

Day 1 at the hospital…

This is insane. Right now at 5am, I’m awake. This has to be the fact that I went to bed so early.

Okay. Sat in the waiting room for two hours. Then I was taken to my room on the 8th floor. Took about two hours to get me all hooked to the wires on my head and body for This Video EEG. I have a video camera pointing to my bed 24 hours a day. Only time I can get out of bed and away from the camera is to use the bathroom. Can’t take showers with these wires on my body and I can’t take these wires off. Only able to wear a zip up hoodie and sweat pants. I have all these wires on my head connected to a box about the side as a smaller purse. Have to carry this with me to the bathroom and this box is connected to a cord that is dragged on the floor wherever I go. But I have to get right back to bed to get back on the camera.

Complicated stuff with all this. Now I’m hungry…  🙂

BRAIN…

I’ve started seeing a new Neurologist recently over at Kansas University Med (KU Med). She seems very nice and seems to know what she’s talking about. I was, as per her suggestion, going to get a VNS implant into my shoulder to help with the seizures that I have had all my life and have gone through every type of Epileptic medication there is. I suggested to her that I get a MRI and EEG first just for us to see the status of my brain. So, on Valentines Day, I got to go back to KU Med to do the lovely two tests for the celebrations of the holiday 🙂 to check everything out. Few weeks later I met with the new doc and she told me that from the looks of my messed up brain (not the exact words she used), doing the VNS implant is off the table.

Now she is talking about full-on brain surgery (Temporal Lobe Resection) to cut away the “bad” parts of my brain. This is going to entail a few more tests first. The first one on March 29th, is similar to what would be called a cognitive test (forget the official name). This is an all day test up at KU Med. A week away from now. I’ll have to let you how all that went afterwards. Then after that, on April 8th I get to start a Seven-Day Video EEG. Seven days stuck in a hospital room. I’m either in the bed, in a chair or visiting the bathroom. No showers. No baths (maybe a sponge-bath done by a pretty college girl ).  Visiting the bathroom is the only time I will be without video cameras watching me all the time. Can’t sleep under sheets and have I must have the lights on while I sleep just so that the video camera will watch me constantly. Arg!

Also as part of the Video EEG is the taking me off my meds and a lack of sleep. I’m sure this will cause me to have a few seizures with those things happening (or lack of happening). I’ve read about people doing these EEG’s and the doctors are looking for the outcome from a certain type of seizure. These people were only having grand-mal seizures, and that’s not what they needed. So, they had to do the Video EEG multiple times.

One more test… SPECT Brain Imaging. This is a 2 hour test that entails the injection a radiopharmaceutical (radio-active) one hour before imaging begins. The imaging is done with me laying down and a “camera” revolving around my head taking 3D images of my brain. The injection of the radio-active stuff shows the blood flow around the brain. After seeing this, the doctors can recognize the areas of the brain that are being used the most and which is used the least

I’ve heard and read that these rooms are pretty nice with a cool TV, fridge and other things. Kinda like a hotel room. Hope I can take my cell phone so I can chat with people while I’m there and brag about what they are missing. ha ha…  I’ll take pictures later when I get in there to show everyone myself and my cool room. I’ll let everyone know how the test next Friday went.

A couple links:

SPECT: http://en.wikipedia.org/wiki/Single-photon_emission_computed_tomography

Video EEG: http://en.wikipedia.org/wiki/Long-term_video-EEG_monitoring

MRI: http://en.wikipedia.org/wiki/Magnetic_resonance_imaging