The Tedious Puzzle

When we arrived the room was empty; just a bed with fresh sheets watching over a lonely window. All of Jordan and Jeanette’s things were there, just not the girls. Before my mom and I could worry a nurse peeked in and told us that Jordan was taking a shower. Our shoulders relaxed and we each found a seat to wait.

I wasn’t sure what to expect today. Yesterday, she was so somber. She sat quietly and didn’t feel much like chatting. She let me read to her, but then she rolled over and closed her eyes in a half-state of nappiness. We’re convinced the test was to blame for her subdued mood. The neurology team wired her chest and the top of her head with electrodes for an extended EEG and video surveillance. They’re trying to understand what’s happening in her brain when her legs and arm shake uncontrollably. The whole team has assumed these spasms were a form of seizure, but Jordan is on so many anti-seizure medicines at the moment that it has everyone puzzled that she continues to have these issues. The latest hypothesis is that they may not be seizures at all. But the team needs more data to decide one way or the other. Hence the Frankenstein bundle of colored wires that erupted from Jordan’s head, wrapped in a bandage she found distastefully drab.

When they first wired her, Jeanette said she was bubbly and cooperative. She was intrigued. Then, the technician told her that she’d have to keep it all on for 24 hours. That was less intriguing to her. In fact, she looked over at her mom and asked incredulously “really?” She weathered through, but in 24 hours she only had three brief spasms. Brief spasms. So brief that there was still insufficient data. So, the team decided to extend the study for another 48 hours. Jordan was livid. By the time I saw her on Saturday morning I think she had resigned herself to her unfashionable fate. She lay there in her bed like a dog or cat who is forced to wear one of those cones to protect themselves after a procedure, looking forlorn and utterly miserable. That’s how I last saw my girl.

Just as I was thinking about this she wheeled into the room with her mother. All of the bandages, electrodes and sorrows had disappeared. She was fresh out of the shower, her hair still wet and her skin looking fresh. She wore a giant smile and shimmied a little in the wheelchair when she saw me. I told her she looked great and gave her a big hug. She wanted to get into the dress she’d had me bring from home. As soon as she’d changed, she visited with my mom and I. It was a completely different girl. I love it when she’s like this. It’s easy to have hope when she has this much spirit.

We’re stuck in a tedious state of ignorance. We don’t know what’s causing the spasms, and we probably won’t have much more insight until the team returns for work on Monday. We don’t know how long Jordan will stay at CHLA for physical therapy, and we probably won’t know until they consult with us on Tuesday. One nurse told us that it could be as long as four weeks. And, we don’t have all the details on the pathology of the biopsies. We know the tumor that was removed was different from previous biopsies. We also know that some of the tissue they biopsied was indeed dead tumor. Short of that, we don’t know much, but again, we hope to learn more in the days ahead.

We also know that Jordan is losing weight. It’s a common side effect of some of the medicines she’s taking. That doesn’t make us feel much better though. She’s quite thin. The CHLA team has ordered her to drink as many milk shakes and smoothies as she’d like. They’re encouraging her to consume calories. This makes her happy.

Jordan takes one day at a time, and keeps her spirits up with fashion and conversation.

Rehab is going slow so far. The seizure/spasm episodes have interrupted some sessions. Then the test delayed others. Jordan’s legs are getting stronger, but she still can’t walk on her own. She needs a walker and someone to guide her. Her bladder isn’t completely under her own control, which makes her angry and often ashamed. We try to remind her whenever we can that this is a common side effect of the surgery, and that it will probably subside as she gets stronger.

Her birthday is our biggest challenge at the moment. It’s next Saturday. She has been pretty excited about the fact that she’s about to officially become a teenager. You can imagine how excited she is about achieving that milestone in the hospital. Until a few days ago, we’d hoped she’d be out of the hospital before her birthday, but that seems a bleak probability at this point. So, Jeanette and I have been preparing her. Today, I told her that it was very likely that she’d have to celebrate at CHLA, but we would make it the biggest blow out ever, I declared. I reminded her of the old adage that when life gives you lemons, you make lemonade (a friend of my mom’s made her a quilt on this theme). Jordan nodded a bit reluctantly. Now, I’ve got to deliver on that promise. I’m open to suggestions from friends. Somehow, we will make #13 memorable – in a good way. I’m determined.