LDL. Peter’s Family Shares Difficult Update as They Focus on Comfort and Time Together

The past few days have brought new challenges for Peter.

Over the last 48 hours, he has developed additional symptoms and is feeling overwhelmingly exhausted. After careful discussion, his care team has started antibiotics in hopes that an underlying infection may be contributing to the sudden downturn. The next couple of days will be telling. If he doesn’t respond, his nurse gently prepared the family for another possibility — that this may represent further progression of his disease.

Those are words no parent is ever ready to fully absorb.

There have also been deeper conversations — the kind centered on end-of-life planning. Difficult, practical, necessary discussions about what Peter’s final chapter could look like, and how to make it as peaceful and comfortable as possible.

His hospice nurse and social worker shared that they can provide a larger hospital bed to better support him at home. The goal is simple but profound: to keep Peter where he belongs — surrounded by family — for as long as possible.

They also reviewed what “the end” may begin to look like physically. And they spoke honestly about another reality — that with his heart already struggling significantly, a sudden cardiac event could take him before those gradual signs ever appear.

So right now, there is a lot to process.

A lot to hold.

The family is considering moving Peter from his bedroom into the living room, so as he declines, he can remain at the heart of the home — in the center of daily life instead of tucked away. It’s a small logistical decision that carries enormous emotional weight.

Through it all, they are choosing presence.

This weekend, they plan to attend a Valentine’s dance hosted by the hospice house. Even now — especially now — they are finding ways to help Peter experience moments of joy. Fresh air outside. Music. Laughter. Tiny sparks of normalcy.

Because one moment he can seem steady, almost himself.

And the next, everything shifts.

Autonomic dysfunction has been relentless — sudden storms layered on top of an already devastating illness. Watching him battle both is heartbreaking in ways words struggle to capture.

So they are taking it the only way they can:

Day by day.
Hour by hour.
Minute by minute.

They continue to feel surrounded by love — by prayers, messages, check-ins, and the quiet presence of a community that has grown to care deeply about their son.

If you’re holding Peter in your thoughts, know that it matters.

Right now, the focus is comfort. Memory-making. Togetherness.

And treasuring every good moment still unfolding.