Navigating New Routines And Care At Home (November 22, 2024)

Today brought a mix of new additions and adjustments as we continue to focus on keeping Ali comfortable and supported. Some much-needed supplies arrived, including a walker and a wheelchair. While Ali is still able to move around on her own, extended activity can cause her pain. The goal is to ensure she can still enjoy time outside the house when she feels up to it.

A bedside oxygen machine was also delivered and set up today. While Ali hasn’t been struggling too much with her breathing, this machine will help in those moments when catching her breath feels like a challenge. Setting it up took a little effort, but once it was ready, Ali gave it a try, and it seemed to help.

Managing Ali’s pain and symptoms continues to be a delicate balance. Right now, her pain is being managed with a combination of Fentanyl, Morphine, and Tylenol. The Morphine dosage is adjustable based on how much pain she’s feeling, which gives her a bit more control over her comfort. For nausea, she’s been prescribed Haldol and Compazine.

She’s also on several medications to address other symptoms. Prilosec, Simethicone, and Lomotil are helping with stomach discomfort, while Senna, Lactulose, and Bisacodyl manage her digestive health. Beyond those, her medications include Lorazepam for anxiety and Melatonin to help with sleep. She's using Magic Mouthwash and Biotene Spray to relieve oral discomfort. Levothyroxine helps regulate her thyroid hormone levels, and Baclofen serves as a muscle relaxant to ease spasms or stiffness. It’s a lot to keep track of, and at times, it feels overwhelming.

We got to meet Ali's hospice nurse for the first time this afternoon. A lot of today’s appointment was focused on getting aligned and setting expectations for the road ahead. She spent time reviewing Ali’s current care plan and discussing what to expect as things progress.

One key point we covered is Ali’s abdominal drain. The nurse checked her stomach and confirmed that we’ll be doing her first at-home abdominal paracentesis procedure next week.

Today felt strange in a way that’s hard to describe. We’re no longer making the constant trips to Vanderbilt Hospital or juggling dozens of appointments each month. Instead, we’re settling into a new routine at home, with Ali’s dedicated hospice nurse now coming to her. It’s a big shift, not just logistically but emotionally.