I have some new test results to share, along with an account of my visit with Gene last night. There are a few encouraging signs in his latest bloodwork, but several serious concerns remain. And yesterday, I had another reminder of how difficult it is to understand what Gene is experiencing when he cannot hear us, struggles to communicate, and is often too drowsy to respond.

My visit with Gene last night

I spent several hours with Gene yesterday evening, until the hospital told me visiting hours had ended and I had to leave.

When I first walked into his room, I smiled at him and went to his bedside. He looked toward me and seemed to give a faint smile, but there wasn’t much expression on his face. He seemed to stare blankly for a moment before turning his attention back to the television.

I found that discouraging. Normally, even when Gene is having a difficult day, he gives me some kind of expression that lets me know he’s registering my presence. Last night, at first, I wasn’t sure how much he was taking in.

His nurse had told me that Gene had been having a rough time and wasn’t responding much. When people said his name, he would generally look toward them, but not do much beyond that.

I decided to try something different.

Because Gene can no longer hear me well enough for ordinary conversation, I brought in a binder containing large, printed questions I wrote that he could answer by pointing to yes or no, basically a handmade, 23-page slideshow using easy-to-see, large-format, bold sans-serif text (example). I wanted to find out where his comprehension was and what he could understand, rather than assuming that his lack of response meant he wasn’t mentally present.

I also wanted to make sure he understands how important it is to not keep pulling his tubes out, which he did again on Monday.

It took him a little time to get used to the presentation. But gradually, he began answering the questions.

He appeared to understand the yes-or-no format. Nearly all his answers were yes, while a few were no. That was encouraging because, based on how he had initially appeared and what I had heard from the nurse, I had worried that he might be too tired, too sedated, or simply not responsive enough to participate.

Instead, he was able to work through the questions with me, the order of which climbed. I started them with easy yeses (“Can you read this?”, where he is, etc.). Then I said out loud how much he hates it there, to forge a shared trauma connection before I asked him for anything. So he would feel safe and understood based on his feelings.

Then came my statement about last week’s setback, the stakes, and finally the ask. I arranged each question so that each yes from him made the next one feel easier to give.

Also, since a confused brain tends to hear the verb and lose the “not,” I was careful to phrase every “do NOT” as an instruction to do something. For example, a directive like “Keep your hands away from the tubes” holds up better than “don’t pull.”

Likewise, those related signs instructed him to point at the tube and the nurse will help. His wish to be comfortable is what’s making him pull, so this gives it somewhere else to go—he gets something to do instead of pulling.

Some of the signage I made to better communicate with Gene (and his responses thereto):

• I have some signs for you. Point to YES or NO. Can you read this? Yes
• You are in the hospital. Cedars-Sinai, near Beverly Hills. Do you understand? Yes
• You are safe. I am here with you.
• I know you hate it here. It is uncomfortable. Am I right? Yes
• Your doctors and nurses are some of the best in the world. Do you understand? Yes
• They are on your side. They want you to get well and go home. Do you want that too? Yes
• Last week you did great. Then you pulled a tube. You got much worse. Did you know that? No
• The tubes keep you alive. If you pull them out, you could die. Do you understand? Yes
• Keep your hands away from the tubes. Can you do that? Yes
• If a tube bothers you, point to it. The nurse will help. Will you point, not pull? Yes
• Your hands are for drums. Not for tubes. Right? Yes
• When nurses come in, let them help you. They will make you more comfortable. Will you let them help? Yes
• When you are better, I will get you out. We will travel and have fun again. Do you want that? Yes
• Ringo Starr. A drum lesson with him awaits. You must be well to go. Do you want to go? Yes
• I love you more than anything. I want you well and happy again. Do you know that? Yes
• Do you love me? Yes
• Do you trust me? Yes
• Do you want to get well and live? Yes
• Promise me: Keep your hands away from the tubes. Let the nurses help you. Deal? Yes
• Thank you. I am proud of you. We will enjoy good times again soon.

I also left a large-print sign for him on the wall at his eye level that reads, “Gene, you are safe in the hospital. Keep your hands away from the tubes. Need something? Point. Love, Alexa.”

That exercise gave me a useful opportunity to see what he could communicate through reading, even though speaking directly to him remains incredibly frustrating for him, for me, and for his doctors and nurses. Without a reliable way to communicate, it is difficult to know whether he hasn’t understood something, hasn’t heard it, or simply doesn’t have the energy to respond.

The hard part about Gene’s whole situation currently is that post-sedation delirium means he may not remember last night’s promises this morning.

Pulling often isn’t a decision at all. It’s a confused brain going after something that itches.

Familiar faces and repeated reminders of where he is are among the best non-drug treatments, so if anyone else is reading this, please go see him and spend a little time with him; that will help tremendously in bringing his brain back online. (And ask the nurse if you could remove his mitts for a little while too. Physical touch is a BIG part of human health and wellness.)

My visit then became more personal.

Gene is still being restrained, but I took off his mittens so I could hold his hand. He responded very positively to that contact.

At first, he was smiling. Then he began crying.

I tried to mouth the words, asking him what was wrong and what was bothering him. He kept making little sounds, saying, “Eh, eh,” as he tried to communicate. Eventually, I was able to understand what he needed.

His back was hurting.

He needs pain medication because he has difficulty finding a comfortable position. Even when the nurses adjust him to make him more comfortable, the movement itself can be quite painful.

The nurses helped reposition him, but he was still struggling with the discomfort. I turned on the television and put on a channel I thought might occupy or entertain him. Instead, he began panicking and becoming anxious. He seemed frightened and unsettled.

While the nurses were adjusting him or working with his medication, he kept saying:

“Alexa, why is it so painful? Why is it so painful?”

I called for the nurse, who went to get his pain medication.

I explained to Gene that his medication was coming soon and that he would feel better once he received it. I held his hand and kept talking to him, trying to occupy his attention and help him through the moment.

Little by little, he calmed down.

I also made little gestures to remind him that I love him. I made a small heart with my hands and then pointed toward him. He responded by making the same gesture back to me, and he smiled.

He wanted to hold my hand. He also took my hand and gave it a kiss.

Those were tender moments, especially after how unresponsive he had seemed when I first arrived.

Then he began asking me not to go.

“Alexa, don’t leave. Alexa, don’t go. I don’t want you to go. I want you to stay.”

Of course, I wanted to stay with him, too. I explained that I would stay as long as I could, but that visiting hours ended at 9p. We both needed to keep that in mind.

He clearly did not want me to leave.

I tried to lighten the mood by making some silly expressions at him. He smiled, laughed, and coughed, and his eyes widened. For a little while, I was able to get him to engage with me in a different way, rather than having him focus on his pain and anxiety.

About 15 minutes after he received his medication, he became much calmer.

I adjusted his blanket and tried to make him comfortable. The medication seemed to ease his pain, but he also became drowsy again. He seemed a little drugged, and although he was no longer visibly distressed, he didn’t seem interested in talking.

He simply smiled, held my hand, and fell asleep.

I stayed with him for several hours, until hospital staff told me that visiting hours had ended and I needed to leave.

It was a difficult visit in some ways. At first, I was discouraged by how blankly he seemed to look at me. The nurse had also warned me that he wasn’t responding much. But once I gave him a way to answer questions in writing, he was able to participate. And when he was hurting and frightened, he managed to communicate what he needed, respond to my reassurance, return my gestures of affection, and tell me how badly he wanted me to stay.

I don’t want to draw conclusions beyond what I actually saw. His awareness and responsiveness still seem to fluctuate, and his medication appears to affect how engaged he can be. But I came away encouraged that, even on a difficult evening, there were ways to reach him.

What the latest test results show

The newest laboratory results offer a mixed picture.

One encouraging change is that Gene’s white blood cell count has come down. It had reached approximately 15.2 on October 25, but by October 27 it was around 11, close to the upper end of the normal range.

That is a welcome development. It does not, on its own, establish that an infection has resolved, but the count has moved in the right direction.

His anemia remains a significant concern. His hemoglobin dropped to 6.2 and 6.4 on October 26 before rising to 7.5 on October 27. That is an improvement from the earlier readings, but it remains well below the normal range.

I don’t want to read too much into individual numbers without the doctors’ interpretation. What matters is understanding how they fit into his overall condition and what the medical team is doing to address them.

The fluid around his lungs remains a concern

An X-ray taken early on October 27 was performed to check the position of Gene’s feeding tube. The report confirms that the tube ends inside his stomach and that his other support lines and devices remain in stable positions.

That is useful confirmation, but the same X-ray also reports persistent fluid around both lungs.

In other words, the problem has not gone away.

The latest analysis of the fluid also shows some changes that I want to understand better. Between October 25 and October 27, the measured glucose level in the fluid fell from 123 to 6. The reported white blood cell count in the fluid rose from 62 to 207, and the proportion of neutrophils increased from 18% to 44%.

I don’t yet have the doctors’ interpretation of these particular findings, and I don’t want to speculate about what is causing the changes. These results need to be considered alongside Gene’s other medical findings, his symptoms, and the treatment he is receiving.

But the changes are worth asking about. I want to understand what the medical team believes they mean, whether they raise additional concerns, and whether they affect his treatment plan.

Where things stand

The latest results show some improvement in Gene’s white blood cell count, but his anemia remains significant, fluid is still present around both lungs, and the fluid analysis has changed in ways that need medical interpretation.

My visit last night also reminded me that Gene’s ability to respond is not always obvious at first. He initially seemed disengaged, but he was able to answer written questions. He struggled with back pain and anxiety, yet after receiving medication and being reassured, he became calm enough to smile, hold my hand, and fall asleep.

I am trying to look at all of this realistically, without overlooking encouraging signs or assuming that one improvement means the larger problems have been resolved.

There is still a great deal we need to understand about Gene’s medical condition, his comfort, and his ability to communicate. I want the doctors to have a clear picture of what I am seeing during my visits, just as I want to understand what the tests and their clinical assessments are telling us.

I will continue to advocate for Gene, to look for ways to communicate with him when speaking isn’t possible, and to ask questions when something in his care needs a clearer explanation.

Thank you for continuing to care about Gene and for being here with us through all of this.

Alexa