Day 05 — Friday, June 21, 2024

9:00 AM #

Shane was completely off sedation. The nurse put soft music on his patient’s radio/call button. His vitals were all within range. CPP was low. Lauren the infirmary nurse was with me and she explained how they calculate CPP from ICP + MAP.

10:00 AM #

Jaz the NP came to explain they would raise the CPP with medication soon. She also gave a road map about the upcoming tracheostomy and feeding tube procedures to guarantee definite access to his airway and stomach. She said Shane would also be spiking fevers over the next few days. They would use antibiotics and chest x-rays to prevent pneumonia, especially while he was on the ventilator. I thanked her and said I was in awe of how the nurses manage the vitals and respond quickly. It’s like watching a symphony of many things all going on at once.

I asked her thoughts on Shane’s condition. She showed me the brain scan with many areas of hemorrhage on both hemispheres. In her opinion it was too early to tell and he was the worst patient in the unit. I asked why. She said, meaning that he was so healthy and had declined so far. He had a long way to go to return to that level of health. I said I noticed sometimes it seemed like he was taking breaths on his own. She said that’s called over-breathing the ventilator. He was starting to breathe in addition to the ventilator. I asked if that was positive. She said it was neutral because some patients don’t progress beyond there.

I asked if being on the ventilator could delay with his natural spontaneous breathing, since the machine is doing the work for him. She said she would do a test to show me, because his O2 was good enough to do it. She turned off the ventilator. His chest became motionless. It was an unpleasant and alarming moment for me. Fortunately, Lauren was very calm and that helped. The NP said that was Shane’s base condition right now. He cannot breathe independently. She turned the ventilator back on.

She asked if I realized what it could mean if he can’t recover from that. I asked if she was talking about possible end-of-life wishes. She said, “Yes, I saw he has a medical directive.” I told her I realized his condition could get to the worst outcome even if there had been improvement. And that I was prepared to respect his wishes to not be on life support long term if the condition was considered hopeless. That’s what he chose and I would honor it. But what I didn’t know is if we were at that moment yet. That’s why we needed their professional opinion. And I was sure that if it was the moment, there would be two doctors there to say it and Dr. LaSalle, Shane’s doctor, would also be saying the same thing. I had seen in the ICU waiting room, whenever it was the worst news, two doctors always arrived together to tell the family.

She said “It’s true, it’s too soon to tell.” I thanked her for giving me the heads up and preparing me for what could come. Inside, it occurred to me that any comments from Jehovah during that intense time period were not about the future or the past, it was laser focused on doing the next reasonable thing, like Bob Rodish said.

12:00 PM #

Marc and Anita Crowder visited. Marc had a scripture for me.

“Love hopes all things” 1 Cor 13:6

That was Jehovah’s thought on Shane’s condition.

1:00 PM #

Chris Fairley helped us track the trend of the hemoglobin decrease. He said EPO could be used to raise hemoglobin and we could present it as a step to prevent a crisis, even if he is not actually in a crisis right now. We showed the chart to the NP and asked if Shane could start on EPO. They said he wasn’t in a blood crisis. I said it was true, and asked if we could please give Shane an advantage now and keep him out of a crisis even after we leave ICU, by doing something boost his hemoglobin.

3:00 PM #

Shane moved his head a few times and his left arm one time. That felt promising. The nurse said that involuntary movements are a neutral sign because even someone who doesn’t regain consciousness will still make involuntary movement. What the doctors and nurses look for are purposeful movement; response to pain, grabbing the bed rails, squeezing your hand, also doing anything on command. If they see that, they raise the GCS score, because it’s a better indicator that the patient will come out of the coma. Shane was still GCS 3.

5:00 PM #

Started EPO

9:00 PM #

Gerbers and Res drove me home. Betty arrived