June 1, 2010 – post 5

Dinner and The Evening

After the MRI, Lisa was hungry so we ate at the new Mexican restaurant down near the cafeteria. Slightly eventful (dad spilled his entire Pepsi on the counter), decent fish tacos, everyone enjoyed it. Then, back up to the room.

This time, Lisa was formally checked in and started to settle in for the night. We were joking a bit, learned how to use the DVD player, talked with Jennifer again about plans for the upcoming hours. Lisa would be hooked up to the EEG for monitoring, they’d do some blood work tomorrow, then a PET scan in the early afternoon.

Jean and I had reserved a room at the Intercontinental Suites Hotel down the street and needed to go check in and unload the car. We told Lisa we’d be leaving, just about the same time she learned she was going to get the EEG hooked up.

The EEG hookup is no fun for her. A couple of dozen sticky sensors are glued to her head and held in place with foul-smelling glue soaked into a little square of gauze. This is one of the things she looks forward to least, but no choice. She kind of bucked up and said we could go, we promised to be back as soon as we could. That was another of those moments where you want to just get up and head home and spare her the discomfort. But, you can’t. Staying is “the right thing to do”, so you do it.

We drove to the hotel. Parking is an interesting challenge in situations like these. We haven’t decided exactly what we’re going to do. One thing we’re pretty sure about is that we don’t want to be walking around the area. This is a little bit new. On the last two trips, we stayed at either the Ronald McDonald house or the Cleveland Clinic Guesthouse. Most of the time, we used the shuttle to go back and forth, but I’d walked it several times too. Some friends who’d been here recently, though, talked about someone being held up at gunpoint, so we’re being more conservative this time. We’re driving everywhere – or taking the shuttle.

The room is nice enough. It’s a suite, which means two beds in one room, then a desk, pull-out sofa, and kitchenette in another. A nice setup and I think it’s going to save us at least some money on food.

That’s another suggestion we can throw out – since we know this is probably a three-week experience, we agreed to balance eating out with eating cheap. We packed in some liquid protein drinks, fruit, and ramen type soups. Also, we brought our own fresh-ground coffee (Peets from California, if you’re curious). I know we’ll be eating some of their cafeteria good (which I personally find pretty good), but that can get expensive, so some meals will be over the sink in the hotel room.

After we checked in and sorted through our clothes, we headed back to the hospital. Lisa’s monitors were in place, but she was laying on the bed looking very, very sad. She looked like she had tears in her eyes, bubbling just below the surface. We asked her and she said no, but I’m not at all convinced. A couple of times during the day, she needed hugs and reassurances. She said last night before we went to bed “this is all getting very real to me”. She’s a trooper and this is familiar stuff, but it was an emotionally intense moment for me. The third time today I’ve wanted us to just pull the plug and head home.

Purpellina was watching her from across the room and Rupert was laying on her chest. They were definitely doing her some good. She’s a strong kid, but the cracks were showing a bit tonight.

I left at around 8:30 to get back to the hotel so I could get at least a few hours of work in. Now, it’s nearly midnight and I’d better get to sleep. The plan Jean and I came up with is to switch off nights, Jean’s in Lisa’s room right now and I come on duty tomorrow at 9. I’ll bring my gear and get some more work done in blocks. Most of the rest of this week is going to be sitting in Lisa’s room, all of us bored to tears, hoping she will go into a seizure so we can get some good EEG readings. What a strange world. Thanks again, Ken.

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