8/5 Round the clock

Was called in last night at 3 am to help keep Chuck in his bed. He gets very active, partially sits up, tries to get out of bed, pushes himself sideways. I take these opportunities to work with his body--help him sit, let him roll to his stomach, encourage him to push this, move that. Then we rest together for an hour or two.

I'm home for a brief respite to shower and eat.

Hoping to get a local MD on Chuck's case to make certain processes go faster and to oversee his progress. In our current situation, the MD is not available much and therefore not as proactive as seems appropriate to us on weaning Chuck from remaining devices.

It's going to be much more difficult for me to think about and execute all the details associated with the practical and financial matters in this season of Chuck's extreme high-maintenance (think 145 pound newborn with strong legs), but will continue to roll with it all a day at a time. See daily update for more medical details.