Wes worked off his own rhythms all day Sunday and through the night and wasn’t on the pacemaker. This morning Dr. Emani started using it again for the atria and Wes seemed to respond well to that. There’s a lot of switching back and forth for various reasons and I can’t always keep them straight.

He came off the paralytic around 4pm Sunday and was having some involuntary muscle spasms as expected by the time we left at 7:30pm. He looked like he was trying to dance as they started in his shoulders, chest, and belly. When we came this morning his eyes were fluttering open as he was being examined and you could see a hint of deliberate movement working below the rest of the shimmies and jolts. During the day it progressed to definite, deliberate movements. Five days after sending him away with the nurses before surgery we’re seeing visible changes and progress, not just the internal progress that’s followed in numbers and rates and lab results. This new stage also brings new challenges, though, since as they reduce the sedation we’ve started seeing his discontent for the first time. Although pain is carefully monitored, there is still discomfort, agitation, and general grumpiness as any kid would experience. He tries to make a sad face but he’s still a little too doped up for it and the breathing tube is still in. He’s also fighting sleep pretty hard, so now there’s some Ativan. He’s off and on various other medications as they try to find a happy middle ground for him, but in general is doing great. The chest tubes will come out soon and once the breathing tube comes out in the next day or so we’ll get to hold him.

It’s been peaceful these past days, but for once it will be nice to have an angry child in my arms. A lot has happened in the last 24 hours and it will continue to progress quickly from here.