Monday Nov 24, 2008 – Lisa and Cleveland Clinic

Today is the first day of our second trip to the Cleveland Clinic. Technically, it’s the second day as we arrived on Sunday at around 10p.m. We left home around 6 and drove straight through except for a half-hour stop along the turnpike for a fast food dinner. We checked into the Ronald McDonald house, room 225. Dad fell asleep almost immediately, but mom and Lisa had a harder time falling asleep.
We took the shuttle at 7:00 from the hotel to the hospital. The shuttle driver was very helpful, she dropped us off across the street from the entrance to building L which houses the MRI units. Jean filled out some paperwork and at about 8:30, Lisa and I were escorted by Glenn to the changing room. We got into hospital scrubs and waited in the 2nd waiting room. Craig the RT provided some reading material that outline the tests Lisa would be given.
She was scheduled for an fMRI, a functional MRI. The tests involve putting her into the MRI machine then having her perform a variety of motor and mental tasks while the techs monitor and record the patterns of brain activity. The fMRI consists of four tests:
The first is a simple motor task, touching the tips of the fingers to the thumb, one by one, over and over in succession until they have enough information and tell her to stop.
The second test consists of ‘rhyming’ tests. A variety of images are projected on to a screen that Lisa will see in a mirror positioned just above her face. She’s to think yes if the words rhyme (“day” and “weigh”) and think no if they don’t (“ballet” and “wallet”). She may also be shows two images, series of vertical and diagonal lies, and press same buttons if they are the same or different.
The third test also involves watching projected images. Some will be nonsense characters, in which case she is to just rest. But others will be letters. When a letter is projected, she’s supposed to think of as many words as possible that begin with the projected letter.
The fourth and final test (of the four we remember, it seems like there were five, but neither of us can come up with a fifth) was listening to a story. The story would be read in short sections. But sections of it would be read forward and backward alternately. She could rest during the backward sections but was to pay attention during the forward sections. Afterward, she’d be asked a series of questions evidently to test comprehension and/or recall.
They slid her into the machine at 9:05 and tested her until nearly 10:30. Dad stayed in the room for moral support. Craig generously provided earplugs for dad – which didn’t really occur to Dad, though having been around MRI machines before it was no surprise.
After the tests, we headed back to the main hospital for an 11:00 meeting with Dr. Kotagal. But we had no idea where were supposed to be. This circles back to the last few days before we left. Jean had been on the phone with the Clinic getting things set up. They’d agreed to send out an itinierary via DHL. But it didn’t arrive in time so we came in fairly blind. We knew about the 8:30 and the 11:00 on Monday but the rest of the week was (and still is at 16:45 Monday) hazy.
With a couple of phone calls, we found out where we were supposed to be and headed there. After finishing another round of paperwork, we were led into a nurse’s office. Where we did some more paperwork. Then, to an examining room where we talked with Dr. Kotagal. He interviewed us about Lisa’s condition, her history since our visit in 2005, her medications, and a small bit about the upcoming tests. We made a request to postpone the WADA test until we knew for sure Lisa was a candidate for surgery. The test involves numbing each side of the brain separately in order to learn about which areas processspeech, visual, auditory, etc. in anticipation of the surgery. But there doesn’t seem to be a point in doing the test right now until we know if she’s a candidate for surgery at all.
We got through the discussions with him then headed to Lisa’s room, where’s she’ll be monitored for two or three (or more) days until they can record some seizure activity. We dropped off the several bags of clothes and provisions we brought with us, then headed down to the cafeteria for breakfast/lunch (at 2 p.m.).
Back to the room, where Lisa was attached to the monitoring device. A set of about 20 electrodes were connected to her head then to a monitoring device. We can watch the lines do their peak-and-valley measurements of brain activity. None of it means much to us, but we can see some differences when watching her chew, laugh, or just relax. Our understanding of the device is that it’ll help locate the starting point of the seizures. One stick point is that they may have to reduce her medications to prompt a seizure. This is scary to us in that her seizures move quickly to status epilepticus. They’re going to monitor her for the rest of the night with her normal doses of medication and talk about lowering the doses tomorrow.
Lisa got to do some singing earlier tonight. A med student was walking around the ward with a guitar. He was going to sing Happy Birthday to You to the 1-year old in the room next to us. We waved him in and asked for a song. His first suggestion was Brown Eyed Girl, which we jumped on. Afterwards, dad asked Lisa if she wanted to do Wonder Drug. So, we borrowed the guitar and went through it. The nurse in the room and the man from the Child Life program (Tom …) both asked if the song was posted anywhere. Not yet, but… šŸ™‚
Currently, Lisa’s just finishing dinner and watching Disney channel. Mom’s trying to catch some sleep and dad’s just finishing up these notes. More later.

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