Day 08 — Monday, June 24, 2024

June 24 2024 Monday

9:00 AM #

Shane was moving his left side more, but nothing moved on the right side yet. He had started bending his left leg at the knee letting it hang off the bed, likely because it felt better to him to get pressure off the wound on his left foot. But, he couldn’t pick the leg back up and rest it on the bed again. It just dangled there, putting pressure on the skin on back of his knee. We didn’t want a pressure wound there too, so we went back and forth for the rest of the day with him pushing his leg off the bed and me lifting it back up onto the bed.

10:00 AM #

I put up pictures of Shane in his suit at Bethel above the head of his bed. I thought it would help if the staff could see Shane as he was before the accident. And I put other pictures and a poster of a Caleb video on the other walls, so that Shane could see familiar things whenever he opened his eyes.

11:00 AM #

The nurses aides said they were going to give Shane a bed bath and asked me to leave. When I came back they said, “We noticed that Shane didn’t have a beard in that picture you put up, so we shaved him!” I looked at Shane and the beard that he had grown out for 6 months was gone. I laughed inside. Hopefully by the time he would care about it, the beard would be back.

1:00 PM #

Dr. Garret LaSalle sent me a message to ask if the ICU doctors would consider delaying the trach procedure. His idea was to see if Shane could make the leap to removing the tubes and breathing room air directly, without the need to open up the trach in his neck. The NP and RN said they had the trach and peg scheduled for the next morning, Tuesday, and had come with the consent form. I asked to consult with the doctors about Dr. LaSalle’s comment. The nurses said the best advantage we could give Shane is to do the trach because it would give him more immediate freedom of movement. They would be able to sit him up in a chair and there would be less risk of pneumonia with the trach than the breathing tubes. And that patients make marked improvement in consciousness and expression when the tubes are out.

Betty was sitting beside me so I asked her thoughts, she was an RN for years. She said that I could make the decision and she would support it. I told the nurses that the advantages they mentioned sounded very good and we would likely take that approach as scheduled. But because Shane volunteered with a medical team, many people were very interested in his progress. So we were weighing their thoughts and comments about the trach procedure too. I asked if we could please consult with the ICU doctors directly. The NP and RN said that the recommendations they were making were exactly what the doctors had advised otherwise they wouldn’t have said it. I said I believed that and at the same time, as a family, we needed to be confident afterwards that we had considered carefully every advantage that could be given to Shane, so we would still like to ask for a consultation with the doctors before signing consent. They didn’t commit to asking but continued the conversation and the RN left the room. When she came back, Dr. Sohail attending was with her.

1:30 PM #

Consultation with attending Dr. Froula and Dr. Sohail. We stood at the nurses station and Dr. LaSalle joined via video conference. We asked if it could benefit Shane to give him a few more days before doing the tracheostomy to see if he could improve enough to not need breathing assistance at all. They said with his current progress in levels of consciousness, they could not guarantee 100% that he wouldn’t enter any crisis in the short term. That is why they wanted to guarantee immediate access to his airway with the trach. Dr. LaSalle had more questions that they answered. The ICU doctors stayed with the recommendation to do the trach as scheduled.

I prayed after the consultation and asked Jehovah to help me ask any more questions that were relevant or to feel confident to sign consent if that was a reasonable step. I finished the prayer and my next thought was that it is reasonable to follow the recommendation of the doctors that have the patient in sight and who frequently see these types of situations. I signed consent for the trach and peg and they scheduled it for the next morning.

9:30 PM #

I went back to Warwick