I spoke with Gene’s doctor today, and there are a few things worth understanding about where we are right now.

The biggest obstacle is still getting Gene to swallow safely.

The speech-language team attempted a video swallow study on Friday, but he couldn’t consistently follow the instructions needed to coordinate swallowing while they observed him under X-ray. Until they can complete that assessment and establish that he can safely swallow his medications, he needs to remain in the hospital.

Part of the problem is finding the right balance with his medication. Without enough medication, Gene can become extremely anxious, irritable, and agitated. With it, he gets too sleepy to participate in the tests and care he needs. His doctor is gradually reducing the dosage, trying to find that middle ground where Gene is awake enough to engage but calm enough to cooperate. They don’t want to reduce it too quickly and make things worse.

For now, Gene is receiving TPN, which is nutrition delivered intravenously, and he is tolerating it.

He still has the nasogastric tube running through his nose. Although it can be used in the hospital, the team generally won’t discharge someone to another facility with this type of tube because it can become dislodged during transport or routine care. If it is inadvertently reinserted into the wrong place, it can cause serious complications, including aspiration into the lungs.

Case manager Josh is working on referrals to find an appropriate facility that can manage Gene’s tracheostomy and more complicated care needs. That process is happening in the background while the medical team works on getting him ready for the next step.

There is also a respiratory concern.

Gene has been producing more secretions, and his latest chest X-ray showed an area that could represent fluid related to his kidney dysfunction or possibly another developing pneumonia. The encouraging part is that he has not had a fever, and his white blood cell count remains normal.

The doctor ordered a procalcitonin blood test, which can help assess whether a bacterial infection may be developing. If the result supports that possibility, they may start antibiotics. Infectious Disease is also involved.

Patients with a tracheostomy who are too sleepy to cough effectively can have difficulty clearing their airways, which increases the risk of pneumonia. So the team is watching this closely.

I asked whether my being there might help Gene participate in the swallow study. The doctor agreed that having a familiar face nearby could help him feel safer and more cooperative, although it is not yet clear whether family can accompany him to the area where the imaging is performed.

I also raised a more difficult subject.

Gene sometimes says he doesn’t want any of this. But he is still experiencing significant confusion. At times, he cannot identify his own name or explain where he is, and his conversations can loop or jump from one subject to another without any apparent connection.

I know how quickly his anxiety can spiral. He has sometimes become convinced that the hospital staff are withholding his medication or starving him, even when that is not what is happening. Once he gets caught in that fear, it can be very difficult to reassure him.

His doctor understands that the medication helps control his anxiety but can also leave him too sedated to participate. That is why they are reducing it slowly rather than stopping it abruptly.

The doctor also made an important distinction regarding Gene’s wishes.

If Gene becomes consistently lucid, understands his situation, and clearly expresses that he no longer wants treatment, those wishes would need to be taken seriously. At that point, we would need to have a meaningful discussion about his goals of care, including whether hospice would be appropriate.

But I have not yet been able to have that kind of clear, sustained conversation with him. A statement made while he is confused and frightened is not the same as a considered decision made when he understands what is happening.

As his POA, I want to make sure we give him the opportunity to communicate what he truly wants.

For now, the immediate priorities are getting his medication balanced, completing a swallow study when he can participate, and determining whether the changes in his chest X-ray represent an infection that needs treatment.

Thank you for taking the time to read this. 

Alexa