Day 06 — Saturday, June 22, 2024
June 22 2024 Saturday
9:00 AM #
Sara Benkwittt, PA and Susan RN met me as I arrived. There was a light in their eyes that I hadn’t seen before. They said Shane improved today. He began localizing. Specifically, early in the morning when they moved him in the lift, his hand reached out and gripped the handrail of the bed. Although his eyes were still closed, he sensed his movement in the air and made an attempt to stabilize himself. He was now a 7T. T because he was non-verbal due to the breathing tube. Sara the PA said she would ask the team about getting an EEG and an MRI to see how the hemorrhaging and midline shift was doing. They also removed the bolt from his skull that was monitoring his ICP. Now that it was out, he could have an MRI. I asked if it was less likely now to need to discuss Shane’s end of life wishes. She said, yes, it wasn’t likely to need that. The doctors would have told us by now if they knew that he was in that condition. They said he is in no way hopeless.
I felt like I took a breath for the first time in 6 days. The PA and the RN were both more enthusiastic than anyone had allowed themselves to show since we’d arrived. Overall, the environment in the ICU is tense and in continual crisis planning. The most diligent staff are the ones who are thinking about the worst case scenario and preparing for it. They are not optimists which makes them very good at what they do. And they are cautious about what they say to the patient’s family. They would rather offer no hope than give false hope. I could see how that protects them from the overwhelming emotional reactions of patients’ families. One of the days, a visitor started lashing out at the workers. They called security and took him outside the locked doors of the unit. I felt bad for the nurses and staff at that moment. I was amazed how they could sustain morale during 12 hour shifts for weeks and months like that. I have no idea how they did it, but I was very grateful.
Betty and I went in to see Shane. She had the sweetest mom voice and said “Aw, poor buddy, you hit your head.” He didn’t respond visibly at that moment. But unlike other days, we got a sense that from time to time he was hearing us. It seemed to coincide with when we could see him taking his own breaths. The monitor on the ventilator marked when he inhaled on his own versus when he was relying on the ventilator. It happened more as the day went on, especially as the ICU unit got quieter and less chaotic. I was concerned that the chaotic environment would distress Shane even subconsciously. Betty suggested we partially close the door to the room. The nurses agreed as long as his vital signs, particularly the o2, stayed in range, as they were in that moment.
1:00 PM #
The doctor gave us an update on Shane. Temp 98.1, the antibiotics were helping fight the pneumonia. Tomorrow, they would start spontaneous breathing test (SBT) to see if Shane could safely breathe on his own. The ventilator support would be turned down so he would do most of the work while the team watched his breathing, oxygen level, and heart rate. If he stayed stable, he’d be getting closer to not being intubated. In 1-2 weeks they had the goal to have him completely off the ventilator, a requirement for admission to a rehab center. And in the short term, if he could get to GCS 8 plus have successful spont tests, they would switch him from the breathing tube to the trach. The trach is an advantage because with the breathing tube, oral bacteria has continual access to the lungs. So the trach will get him further out of reach of pneumonia. Also they would do the peg, feeding tube, in a few days. His progress showed that the primitive brain was intact, although he wasn’t yet opening his eyes or following commands. He was still GCS 7T.
5:00 PM #
Betty went home with Debi to rest.
8:30 PM #
I closed the room door and sang Inspiried by Your Wonders quietly until visiting hours ended. As I left that night the nurses said they heard it. I felt embarrassed but they said it didn’t bother anyone.