Moments In Grace: Navigating Challenges With Ali At Home (December 9, 2024)

I wanted to take a moment to update everyone on how things are going with Ali since my last message. As you know, she’s been home on hospice care since November after her stay at Vanderbilt Hospital. These past weeks have been a mix of challenges, small victories, and moments of grace. Here’s where we stand now:

First, a heartfelt thank you to Uncle Brad, who arrived safely about a week ago and has been an incredible help around the house. Among other things, he installed a new showerhead with an extended hose, making it much easier for Ali to shower while seated. It’s a small change, but it’s brought her much-needed comfort and dignity.

When Ali first came home, she was experiencing frequent hallucinations and spent much of her time in a trance-like state. With guidance from her hospice nurse, we adjusted her pain medications and added Haloperidol to manage these episodes. The improvement has been noticeable, though we’re closely monitoring her blood pressure since this medication tends to cause it to rise. Managing her symptoms while maintaining her overall stability remains an ongoing balancing act.

On a brighter note, it seems the stubborn blockage she’s been battling may have partially cleared. This has slightly improved her ability to keep food down, reducing the frequency of vomiting. While her appetite is still minimal, this small progress has brought some relief.

Ali is extremely frail, now weighing around 70 pounds... a significant drop from just a month ago. Providing her with as much nutrition as possible remains a priority, though it’s an uphill battle.

She can walk short distances around the house with a walker, but we’re always close by to prevent dizziness or falls. Even these small movements are critical to reducing her risk of blood clots, as anticoagulants aren’t part of her hospice care regimen. Despite her physical challenges, her spirit lights up when she’s with the kids. Those moments of joy remind us of what we’re holding onto.

Liam had his parent-teacher conference last week, and I can’t say enough about the incredible staff at Shayne Elementary. Five staff members attended, all fully aware of our family’s situation and dedicated to supporting Liam emotionally and academically. I’m relieved to share that he’s doing well, showing resilience and no signs of distress so far.

Avalynn, who’s nearly two, doesn’t fully understand what’s happening but is very perceptive of the energy in the house. Even at her age, she seems to sense when things feel heavy. We’re doing our best to keep things positive and as normal as possible for her. Navigating these moments with the kids has been one of the hardest parts of this journey, it’s heartbreaking to introduce them to life’s harsh realities so early.

Ali’s hospice nurse is scheduled to visit tomorrow afternoon. Another abdominal paracentesis is planned to help manage her discomfort, and the nurse will review her medications and supplies. A few essentials are running low, but they’ll ensure we have everything needed to keep her as comfortable as possible.