Exhaustion And Grace: Finding Light In The Hardest Days (December 10, 2024)

One of yesterday’s hurdles involved getting Ali’s liquid morphine prescription filled. While her hospice nurse was able to secure the prescription at a local pharmacy, the closest one with it in stock was the Walgreens in Cool Springs. Unfortunately, that pharmacy closed at 6:00 PM, leaving us with a tight window to pick it up.

Thanks to Ali’s sister, who dropped everything to make the trip, we were able to get the medication in time. It wasn’t easy, but knowing we have this critical pain management tool on hand brings much-needed peace of mind.

Ali underwent another abdominal paracentesis procedure at home yesterday, draining 1.2 liters of fluid. This was her first procedure since December 3rd, when we removed the maximum two liters allowed during at-home care.

Each liter of fluid drained weighs about 2.2 pounds, meaning yesterday’s procedure eased roughly 2.6 pounds of pressure from her body. While this brings some relief, it’s the smallest amount we’ve been able to drain in recent memory. There are two potential reasons for this:

• Without the benefit of ultrasound guidance, which is available in the hospital, we rely on positioning and experience to perform the procedure at home. This can sometimes limit how much fluid is removed, leaving some behind. While it’s not a health risk, it can lead to lingering discomfort for Ali.

• On the other hand, this could indicate that the pace of Ali’s fluid accumulation has slowed down significantly. We’ve seen temporary dips like this before, but they’ve always been followed by accelerated buildup. Still, we’re holding onto hope that this time might be different.

Doctors have repeatedly reassured us that leaving some fluid behind isn’t harmful as long as it isn’t causing pain. Knowing this helps us manage our expectations while staying focused on Ali’s comfort.

In the midst of all this, we received a touching gesture that lifted our spirits. Nurse Kyra and Nurse Nicole from the Interventional Radiology unit at Vanderbilt Hospital left a voicemail for Ali, offering their support and encouragement.

We’ve spent countless hours in their unit since April, and it’s really moving to know they remember Ali and continue to care about her well-being. Their message reminded us how much compassion exists, even in the most difficult circumstances.

I am the most tired I’ve ever been in my life. It’s not just physical, though my body feels like it’s running on fumes, constantly aching from long days and short, restless nights. It’s a soul-deep exhaustion, the kind that comes from carrying too much for too long. My mind races with tasks and worries, yet it’s blank when I try to focus. Every breath feels heavy, like it takes effort to just keep going. Even moments of rest are restless... I sit down, but my thoughts don’t stop, and neither does the guilt for taking even a second for myself. This kind of tired seeps into every part of me, making everything feel slow and overwhelming. But somehow, I keep moving, because stopping doesn’t feel like an option.