I spoke with Gene’s speech-language pathologist today, and two things stood out: a new concern about his willingness to eat, and the possibility that his severe hearing loss is making his confusion appear worse than it really is.

The first concern came up when the speech-language pathologist offered Gene some water and asked whether he wanted anything else. He declined everything.

That is unusual for him.

As recently as Sunday, Gene still had an appetite. In fact, he was very emphatic about wanting chocolate-covered strawberries for his birthday tomorrow. So this sudden reluctance to eat is a change, although we do not yet know what is behind it.

The doctor believes part of the problem may be that Gene cannot stay awake long enough to eat safely. He often drifts back into sleep, and when he is awake, he does not always follow instructions consistently.

His previous video swallow study did not go well because he was unable to participate properly. Without a successful study, the team cannot reliably determine whether food is reaching his stomach or entering his airway and lungs instead. That is called aspiration, and it can cause serious complications, particularly in someone who has already experienced respiratory problems.

The tracheostomy can also affect swallowing, although it does not automatically mean someone cannot swallow safely.

I asked whether there might be a way to let Gene have at least a tiny taste of something for his birthday.

He had specifically asked for chocolate-covered strawberries, but the solid chocolate and strawberry seeds could make them difficult to manage safely. We discussed chocolate pudding as a softer alternative.

The speech-language pathologist agreed that, if Gene is sufficiently awake and genuinely wants to try it, we can coordinate a very small taste at his bedside tomorrow and see how he responds.

There is an important caveat: a tiny taste is not the same as establishing that Gene can safely eat. Without the appropriate swallowing assessment, there is still a risk that food could enter his airway. We will go slowly and follow the team’s guidance rather than treating this as permission for him to resume eating normally.

I plan to arrive around 11:30a tomorrow. I will notify the nursing staff when I get there so they can coordinate with the speech-language pathologist.

If Gene is awake and willing to participate, we can try the small taste. If things go well, the team can then work toward arranging another formal video swallow study on a weekday.

The other issue I raised is his hearing.

Gene repeatedly tells me that he cannot hear me, even when I am standing close and speaking loudly. He tries to read my lips, which takes concentration and can leave him looking confused or disengaged.

But when I type questions on my phone and show them to him, he can read them and respond appropriately.

That difference matters.

I have watched Gene progress from being deeply sedated and unresponsive on a ventilator to communicating through hand signals, then speaking again, and now sometimes answering questions with a surprising degree of awareness. His condition is still inconsistent, but I do not think we should automatically interpret every blank look or missed instruction as evidence that he does not understand.

He may simply not be hearing the question.

I explained this to the speech-language pathologist and asked whether the hospital could try a personal voice amplifier or another way to make communication easier. She agreed to raise it with the medical team. If an amplifier does not help, they may need to investigate the hearing problem more thoroughly.

In the meantime, communicating in writing seems to be a practical way to help Gene understand what is being asked of him. I would like the staff to use that approach more consistently whenever possible.

Tomorrow is his birthday, and I am hoping we can make the day feel a little more like his own, even if all he can safely manage is a tiny taste of chocolate pudding.

The immediate question is whether he will be awake enough to try.

Thank you for taking the time to read this. 

Alexa