This is how Mark’s behavior is categorized at the change of any shift. To the new nurse, the new sitter, the new nurse’s aide. “He has intermittent agitation.” This reminds me of teacher-speak for when you try to carefully explain to a parent that a kid is having a hard time. For Mark, it’s code for “keep your eyes on this one. It can come out of nowhere and be intense.”
Still, over the last couple days, they’ve been able to remove Mark’s mitts (the ones that look like boxing gloves) while keeping the “soft restraints” on. These include a vest which is strapped to the bed and canvas ties that are on 3/4 of his limbs (the doctors would not allow his incised leg to be tied down, for obvious reasons). He’s had greater periods of calm and rest. And then sometimes, something switches in his brain and the fight or flight response kicks in.
Last night, Mark was moved to what is actually the third hospital he’s be in since his surgery. His surgery was at Presby, his ICU step-down unit was in Montefiore (attached by sky bridge to Presby), and last night he was moved to a traumatic brain injury rehab unit at Mercy Hospital. Each one of these changes, for the delirium-minded patient like Mark, creates a resurgence of confusion and agitation. He will need a few days, most likely, to return to the baseline he left behind at Montefiore. And then hopefully he will climb up from there. Because as he is, there’s no way I could handle him at home.
I tried to go visit Mark at Mercy last night, but the ambulance transport turned out to be three hours late. That landed him at the new hospital after visiting hours. I drove home. A couple hours laters, we talked by phone. He was, I would say in teacher-speak, “activated.” “These people are morons!” he yelled. “They are making me stay at Bettis all night!” “I’m leaving at 3am!” You’ll have PT tomorrow, I said, to help you get stronger so you can be safe when you come home. “I’m not doing it!” he roared.
The nurse called me an hour later. They already had called security to come talk to him once. They legally cannot restrain him in the same way they can outside of a rehab unit. So now, he is in no direct restraints. Instead, they have him in the completely-ridiculously-named “canopy bed.” This is like a mesh tent they put over and attach to the bed. So, like a cloth cage. He’s unrestrained in there, but he at least can’t get out of bed which at this point with his tiny legs and buckling knees, would be devastating. I told the nurse that the chance he’ll pull out his leg drains is probably about 100%. “He’s already been going after them,” she said.
He did get one staple out of his neck already.
Last night I had a dream that I was driving a car in the dark. All of a sudden it felt like the car was driving on Vaseline. I couldn’t see anything as I slid and slid. I could hear the car going off the road, hitting brush, before finally coming to a stop in the woods.
I was not injured.
I was also not fine.
This is exactly the problem that we had with Matt if they would have discharged him to a rehab place. Fortunately because he was disoriented it allowed them to keep him on the regular unit and keep him restrained. So he was on a regular surgery floor but could be restrained. Both Steven and I were groaning when we read what you wrote because of just so counterproductive and frustrating. I understand your dream.
Praying for peace and calm and healing for Mark and for you – from Jim Harry, a friend at Bettis
I read your message to Mark today. Thank you.
I’m on the edge of my seat, holding on for your sanity, your strength, your hope and your heart… I’m praying for Mark and for you… although I’m far away, I’m paying attention and praying. Bless you both, bless your family. Take the best care of you that you can through this… much love
xoxo Thank you Sally