So far so good here. I've only had two altercations so far and Lupe at the front desk did not approach us with a rectal thermometer upon entry this time. We checked into this little Bed and Breakfast they call Stanford Hospital this morning and Dominic was fine until they started examining him.
When they first took us to our "room" I almost freaked out on the woman. It was a dark, shared room with an infant and a large family of four. I told her there must be some mistake, I was told we would have our own room since they would be videotaping the eeg. I took extra care to explain Dominic's autism, ocd and adhd with the woman on the phone. They knew in advance that he was not going to be an ideal patient and sit quietly in his bed with the probed eeg helmet on and don't even get me started on his obsession with doors.
The nurse must have seen the look of pure evil on my face as she assured me she could move some things around. We rolled our wagon of crap, ahem, I mean belongings over to a play room. I brought the Doodle's cart so that he could have an ounce of pleasure during his long eeg study. I must be either stupid or I wasn't paying very close attention when they explained this video eeg to me. I was told he would be able to walk around the room. Shame on me for not asking the appropriate questions, I just assumed in this day and age of technology, satellites and wireless communication that when they told me he would be able to walk around, it would not mean a two year old would have to carry a seven pound power-pack and drag a twelve foot industrial extension cord around with him. He can walk around if he had super powers maybe. He can walk around if her weren't dragging a large computer screen and cart with hard drive attached to his head via long and heavy electrical cords, like the kind you'd have in your garage.
I have to shadow his every move and follow next to him holding his power pack and hoping he's not going to trip on the extension cord. This has to be a safety issue in the hospital's OSHA manual. He keeps grabbing these cords, which, did I mention--are attached to his head? And all I can think about is where has this long-ass filthy cord has been? Where in this hospital has this cord been dragged across a dirty, germ filled floor and now my baby is touching it. I've never been a germaphobe until today. The nurse rolled her eyes when I asked her for some disinfectant wipes so that I could clean it.
I'm sure I've been labled "difficult". I can tell by the look on their faces. Oh well.
Around 2:00 today the eeg tech came in to hook us up, and not in a good way. Speaking of technology or lack there of, can you believe we are in the year 2009 and they haven't figured out a smarter, safer more practical way to affix the leads to a person's head and hair than using a toxic glue resembling and smelling like Rubber Cement.
When the technician first cracked open the glue, I could immediately smell it. It was stronger than the illegal dental acrylic they are using in cheap nail salons. Then I watched her begin to put it into the Doodle's hair....
"Oh no you dinnn't", I said.
I got pretty hostile when I asked her what she was doing? She responded with a shrug and told me it was the glue for the eeg leads.
"Uhm, no. I'm getting a headache from the fumes--you are not putting that in my baby's hair. What is it?"
She assured me it was safe but from the smell, I could tell there was no way this could be safe. Then she told me not to worry that they get it out with Acetone! Yes. I said, Acetone! I told her we would be checking out and foregoing this procedure if that was the only way to do this. I asked why in Santa Rosa did they use a safe, nontoxic gel and a cute little cap to hold the leads on? Again I got the shrug. She waited a few minutes, I guess to think of an answer--and responded with,
"The caps don't work because the head sizes vary so much".
"Uh, Huh, that is why they make the caps in different sizes, for the different sized heads"...I retorted.
She just looked at me.
Did you know that the video part of this eeg is not automatic? Speaking again of technology, when Dominic does decide to drag the cord and power pack around the room, I'm supposed to MANUALLY move the camera to follow him. Of course this is virtually impossible because it has become my full time job to hold the power pack and make sure he doesn't trip on the cords.
Finally, the technician told me she didn't have to use the glue, she could use tape. Really? I thanked her and now Dominic is sporting a nice purple turban.
Can you believe he has not had ONE seizure today? Yesterday he had at least 20. Today, zero. I've never wanted him to have a seizure before, but he needs to have one or more during this visit or it will be a complete waste of time.
I'll end this little ditty with the highlight of our day was when Grammy, Papa and Jimmy popped by for a visit. Grammy went down to the gift shop and bought the Doodle a monkey back pack so that we could stick the giant power pack in the back pack, so now I only have to worry about the cord and the camera.
I'm going to chalk today up to another huge learning experience and hope for the best.