I visited Gene today, and one thing became especially clear: he may be understanding less than it sometimes appears, because his hearing has become a major obstacle to communicating with him.

When I saw him, he seemed reasonably aware of his surroundings. I typed questions on my phone and showed them to him. He read them and responded accurately.

I asked where he was, and he knew he was at Cedars-Sinai. He correctly identified me by my full name, knew his own name and date of birth, and answered questions about how he was feeling and what he wanted for his birthday.

That was encouraging.

The problem is that Gene, who was already very hard of hearing before this hospitalization, now seems almost completely unable to hear ordinary conversation. He keeps telling me that he is trying to read my lips. Even when I speak loudly and stand close to him, he struggles to understand me.

Imagine waking up in a hospital after weeks of critical illness, surrounded by people giving instructions and performing procedures, but being unable to hear what they are saying. It would be frightening and disorienting.

I suspect this is contributing to some of the confusion we have been seeing. When I communicate with him in writing, he can sometimes respond quite clearly.

His awareness still fluctuates, though. The doctor told me that when he checked on Gene earlier today, he was much less engaged. He could respond to simple questions, but not much beyond that. So we still have to be careful about assuming that a good interaction means the confusion has resolved.

The doctor is considering another video swallow study, potentially as soon as tomorrow or Tuesday, depending on Gene’s condition and the availability of the testing team.

The challenge is catching him during a period when he is awake enough to follow the instructions. His previous attempt did not go well, and the team wants to give him the best possible chance of participating successfully.

They are also weighing whether they can gradually reduce his restraints. The concern is that he might pull out the nasogastric feeding tube if he becomes agitated or confused. If he remains alert and cooperative without the restraints, they may be able to move toward removing the tube, provided his swallowing can be shown to be safe.

The doctor asked whether I could be present for the next swallow assessment because my being there might help Gene feel more comfortable. I am trying to make that happen. I expect to be there Wednesday around 11 a.m., although the hospital may be able to arrange the test sooner. If I receive a call from Cedars, particularly from the speech-language pathology team, I will do my best to answer.

There are some respiratory concerns as well.

Gene’s latest chest X-ray looked slightly worse. Some of the changes may be fluid related to his kidney dysfunction, while others could potentially reflect aspiration, meaning material entering the lungs rather than the stomach. His white blood cell count has also risen slightly.

Some bacteria have grown in cultures from his throat, but they have been present before. The question is whether they are causing an active pneumonia or simply colonizing his airway without currently causing an infection.

Infectious Disease is reviewing the findings. The doctors are being cautious about prescribing antibiotics unnecessarily because antibiotics themselves can cause complications and contribute to antibiotic resistance.

The good news is that his respiratory secretions were relatively minimal today. I also noticed some older-looking blood in the suction tubing. The doctor explained that small amounts of blood can sometimes result from irritation during suctioning or respiratory treatments. They will monitor it, particularly if it becomes persistent or increases.

One smaller detail may also help explain some of Gene’s behavior.

His nose is very itchy where the feeding tube passes through his nostrils. Because his hands are restrained and covered with mittens, he cannot scratch it himself. What may look like an attempt to pull out the tube could sometimes be an effort to relieve that discomfort.

I explained this to the doctor, who will make the nursing team aware of it. They can help him manage the irritation and remind him to ask for assistance rather than trying to adjust the tube himself.

Gene also told me that he had not realized he had undergone a swallow study or that he had been unable to complete it successfully. That is another reminder of how much his awareness can vary from one moment to the next.

I am encouraged by what he demonstrated when we communicated in writing today. He could read, understand, and answer specific questions correctly.

The next step is to see whether the team can catch him during one of those clearer periods and give him another opportunity to complete the swallow study safely.

Thank you for taking the time to read this. 

Alexa