June 2, 2010 – post 1

The Morning PET Scan

Tuesday night was my night back at the hotel, the plan is for Jean and me to switch off every night so at least one of us will be fresh every day. I’m writing this Thursday night and not convinced it’s working. Neither of us really wants to leave the hospital room. but we’re doing our best to be “sensible” about it. I at least have a couple of competing interests – getting code written for work and getting this website updated. Jean has to force herself to take a break.

When I left Tuesday night, the plan was to get Lisa up at around 5 a.m. for a blood draw and so she could eat. She has a PET scan scheduled at 1 p.m., which means no food after 7 a.m. This is something that you always have to be ready for, fasting before tests. The nurses here are on the ball – “what time would you like us to bring you some food?” “Would you like cereal or yogurt or what?” The nurses at all of the hospitals we’ve been to have done a great job (the Cleveland Clinic, St. Joes in Ypsilanti, and the U of M), but we really feel closest to the ones here.

When I got back to Lisa’s room around 9:30, she was starving hungry. She’s insisting on fish tacos once the test are done. They have a new restaurant downstairs and the food was good yesterday.

We talked about the morning – she said she’d had an “evil blood draw”. Her veins are not always easy to find and even when they find them, they’re not easy to get to and this morning was no exception. The ended up taking blood from one of her fingers, near the knuckle. Ouch.

She was busy working on her History assignment – two more to go, then a final paper for her Comedy class, and she’s done with the school year.

Dr. Kotagal and the team came by around 11, the plan is to stop her medication now that she’s settled in, we’re jumping right in.

By 11:15, she was dealing with a bad headache. This is where things are going to be rough for her. We’re trying to deal with seizures and she’s dealing with migraines. Jennifer checked and found it was OK for her to have some Tylenol (no effect on the PET), so we let her do that. Another tough decision point – what are the interactions? How much do we have to let her put up with? More about that on Thursday, but I’m trying to stay chronological.

Our friend Tom from Child life Services came by. We remembered each other from last time. He remembered our Wonder Drug song and I asked about Brian Fisk, who’d been up playing guitar with us back in 2008. Brian’s still around, evidently, but Tom wasn’t sure about his schedule. He did say he’d send the woman who plays guitar up and also some volunteers with crafts. Sure enough, shortly after he left, a very nice woman (Melanie?) came by with a craft tray. Lisa used the scented colored markers and drew a variety of stick figures – one of her current games is to try and make them recognizable with just a few characteristics. Darth Vader’s helmet. Severus Snape’s cape and black hair. Harry Potter’s scar. It’s fun to watch. We argue about whether or not it’s “fair game” to use word balloons or props.

I asked the woman about her background. I’ve talked to a couple of people who took degrees in art and music therapy and it didn’t sound like a great field to get into – another field with too many people and not enough jobs. But this lady really enjoyed it, so more power to her! She was sweet and engaged Lisa pretty well.

At 1p, the transport came and Lisa and I headed down to the PET scan area. They (Becky) injected her with sometime and she had to lay still for about 30 minutes while they took some baseline EEG readings.

I was sitting beside her in the semi-darkened room while Lourdes was outside watching the monitor. I looked at her and was grateful for how calm she looked. It’s the faith and the trust she has in this hospital and its staff. She feel completely taken care of, completely safe, completely loved and held up and supported. And it affects us as well. Jean and I have already had two or three discussions about how we need to abandon our plans and preconceptions and let this process unfold. We trust these people and that’s the key. I remember at the U of M, being on guard all the time after those first few incidents, always wondering “what’s next?” and never with a clear sense that it was Lisa who was the center of their universe.

(Not to make too much of a big deal of it. It was not the nurses, they were all great, and probably not the doctors, who – in general – we liked. It was the overall feeling. I never really escaped the sense that there was an undercurrent of “wow, that would be an interesting procedure for the residents to see” involved in each decision they made. I don’t feel that here. I could be completely wrong, but then, that’s life, isn’t it?)

Once the first scan was done, another tech (Mike) came and got Lisa to roll her into the PET machine room. I got up to follow, but he made it pretty clear that I could stay where I was or he could take me to the waiting room. He didn’t want her distracted. At some points in the past, that would have tweaked me the wrong way, but Lisa’s been being more independent. If she’d really felt scared or nervous, she’d ask for me to come in. She didn’t, so I was OK with waiting.

The basement with the machinery is kind of interesting – listening to the staff talking about mundane non-work things while they’re adjusting the instruments and filling out paperwork. Again, I noticed my own perceptions of it. In some situations, I might have thought “they are too distracted, are they doing a good job?” but here, my thought was more like watching journeyman carpenters doing the job 110% but talking about sports or fishing. The talk wasn’t a distraction, the talk was just background hum to masterful execution. Am I right or wrong? Who knows? But, like Lisa, I trust these folks.

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