Day 12 — Friday, June 28, 2024

9:00am #

Shane was an 11(T). They are very pleased. PT stood him up again. The doctors anticipate that he could move to rehab the next week or the following week.

12:00pm #

They put him in the recliner, and he looked repeatedly at the restraints on both of his wrists. I knew that look. Shane was making his plans. :) He dropped his left arm on the side of the chair and found where the restraint was connected to the bottom of the recliner. His arm was long enough to reach underneath. He detached the restraint. The nurses said not to stop him while he was doing something. Just to wait until he finished and then correct it afterwards. They said the patient gets easily frustrated if they are repeatedly told no. I called the nurse and they moved the strap where they thought it was out of reach, this time they reattached it to the bottom of the patient bed. They underestimated how long his arms were. When they left, he reached under the bed and detached it again. When they came back in, he had the buckle end in his hand and was examining it in the light. He gradually got tired again and fell asleep and they reattached the restraints. I told the nurse it was hard for me to feel like we were treating him like a child but I had noticed that if I told him not to do something, he was frustrated and seemed determined that he should do it. And part of me didn’t want to stop him from solving those problems because it seemed satisfying to him when he did. The nurse explained that the brain repairs itself in stages and for a few days a patient will only have the ability to protect themselves of a toddler. So they need extra protection while their judgment is getting restored. She said avoid directly confronting the patient and make sure the area and items are safe around them. She said it was normal and eventually he would be back to himself again. They said he smiled and gave thumbs up to them often. I was sure by then he figured out that they were the ones who could help him get out of there, if he convinced them he was doing well.

3:00pm #

Shane could bend his right leg at the knee. He crossed both his legs at the ankles. He waved eagerly when he recognized our friends who visited. Jeremy and Youn came to visit. When Jeremy was in the room with us, a nurse came in and said she would give him a shot, he saw Shane mouth the word “ok.“ It was the first time he tried to say any words. I felt relieved that maybe he could speak after all, once the trach was capped.

5:00pm #

He breathed mostly on his own all day, the ventilator only kicked in a few times. The doctors said they would start a trach collar next. It would be attached to the wall oxygen supply instead of the ventilator. The concentrated O2 is supplied passively via a small mask that sits at the opening of the trach. So the patient is doing all the breathing themselves.

8:00pm #

We watched Was It Designed? videos. When each one finished he gave a thumbs up so I would play another one. He seemed to like having something to focus his eyes on.