Yesterday I posted on Facebook that Jude was having a much better day! In fact his nurse said it was one of the first days that she felt like she was seeing "Jude". He was smiling, communicating in his way, tracking things with his eyes, and when I got home he was still doing well. Then the BOTTOM fell out. I mean really? UGH! Jude was literally up the majority of the night. I tried Ativan but received no results and then finally about 12-1am I tried Morphine. It took about an hour for the Morphine to kick in and he finally relaxed and fell asleep.
My guess is Jude would sleep about 30-45 minutes and would then wake up crying. One of us would have to get up to reposition him. Sometimes we had to adjust oxygen or pat him for a bit to calm him back down. He would also wake up coughing terribly and we would need to suction him.
It was frustrating. I would like to go home and take a nap, but I am not sure I want to give up any hours at work.