While we are waiting for the surgery transport team to come and grab Pablo, I have two stories for you: one scary, one funny. What else do I ever have?
What a night here at CHLA. Pablo went to sleep early. Jo Ann went home (after pulling back-to-back overnight shifts) to take a bath and sleep in our deluxe bed. Pablo wanted to have his bed all to himself, so I set up camp in the extra hospital bed I wrangled from an empty room the other day. This bed is not nearly as nice as our OG bed—I've never heard an air mattress squeak like rusty springs. Whatever my opinion of the bed, I wasn't in it long. Two scenes into this week's 'Mad Men' (thank you Steve Jobs/iTunes!), Pablo started screaming bloody murder.
I sprung (haha) out of bed and ran over to him. I already knew he sounded horrified. Looking into his eyes in the semi-dark room, I could see a perfect storm of fear, physical pain and something we haven't seen in P's eyes ever: terror. The impetus for all this emotion commotion? While he was peacefully snoozing, his legs began to twitch involuntarily. I'm not talking minor movements. It was as if his legs were doing the Charleston or some hop-scotch pattern. They were moving in a distinct pattern: left thigh up, knee in, ankle over right leg, thigh down; right thigh up, knee in, ankle over left leg. I was looking at this, looking up at his eyes, looking back down. Usually, when you see a human body doing something like this, you have a tub of popcorn in your lap, and you've paid $11.50 for the seat you're sitting in. Total horror movie material.
'Are you moving your legs?' I asked Pablo. 'Nooooooo Papa!' he screamed at the top of his lungs. 'My legs are doing that. They woke me up. They won't stop. I'm so tiiiiiiired! I just want to sleeeeeeep.' He was bawling, nearly hyperventilating. I put my hands on his knees. I could feel the strange current in his legs. Even with the downward pressure applied by my hands, the twitching continued. I started crying. I felt helpless. Useless. Ill-equipped to help my son. This is definitely not in the play book. I tried hard to think of what to do. My mind went blank. I scurried around above the pillows with one free hand, looking for the damn nurse call button. Couldn't find it. Pablo continued screaming. If we were in a battlefield, he'd have been screaming 'MEDIC!' But we weren't, so I held him in my arms, looked him in the eyes and spoke to him louder than his screaming. I told him I was going to run down the hall to get Danica, our nurse, and that he'd have to be OK without me for one minute. I told him I loved him and I was helping him. The whole time I was thinking, 'Oh f**k. This is how it goes. We get good news about the tumor, and then the endless stream of drugs they've been pumping into him causes nerve damage.'
When I got back to the room with Danica, he was screaming 'I want Mahhhhhhhhhhhhmeeeeeeeeee!' Good idea. I called Jo Ann. She was in the bathtub. At home. I barked the news into the phone and hung up. I knew she'd fly right over here. With all the screaming, I couldn't hear her anyway. It's 1.89 miles from our house to CHLA, so it'd only take a moment. Danica mentioned it might be a side effect of Zantac, a drug they give to Pablo to prevent stomach upset.
OK, I thought. Zantac. That makes sense. In a word, the wide world of nerve damage narrowed down to one simple, logical explanation. Moments later the on-duty pediatrician was standing before us. A vial of Atavan was on its way down the hall. It would calm him, and help him fall back asleep.
Jo Ann arrived during all of this, and jumped in bed with him. After 20 minutes, P was asleep, and she slipped out of bed. I slid a pillow into her place, and P snuggled up to it.
The placebo pillow worked, and so did the drug. But neither stopped the twitching. Withing 30 minutes, Pablo woke up again. Screamed again. I jumped up again, this time hopping into his bed. Cramming myself into one quarter of the bed space, I pulled the guard rail up behind me to hold myself up. I got Pablo to breathe with me. He was calming down. No matter what drugs he's given, slowing down via breathing is the best thing for him. It's that acceptance thing coming to life. I pulled his legs up toward my body, and wrapped my arms around his legs. And that's how we slept for the remainder of the night. The twitching slowed down, but it never stopped. In fact, his arms started twitching at some point as well.
When we woke up this morning, Pablo was bright and happy. He didn't mention the terrible episode, and I didn't either. He's been cracking us up all morning.
Jo Ann came straight here after dropping Grady at St Francis in La Canada. Before I went home to shower, we opened the shades, and sat on Pablo's bed. It was time to tell him that today was another surgery day. We took turns talking, alternating sentences or paragraphs, swiftly weaving our way through the description and explanation for today's procedure. While I was home, Jo Ann and a CHLA Child Life specialist did a play exercise with Pablo, in an attempt to increase his comfort with his fourth surgery in two weeks. They used a doll to illustrate what and where Dr Stein would be doing to his body. When I got here, the doll was sitting next to P in bed. The doll didn't look happy.
I asked him what was up with his doll.
'Flippin' babies!' he said, laughing his version of a sinister, sassy laugh.
'Whaaaaaat?' I replied. That was the funniest thing I'd heard, uh, all day.
The following photos illustrate just what he meant by 'flippin' babies.'