Staying Positive, Adjustments To Medication, And Abdominal Paracentesis Procedure (November 24-26, 2024)

Hospice care is, for most people, the final stop. We’re not naive to that reality. The stats for stage 4 stomach cancer paint a grim picture, but there are always stories of people beating the odds, miracles that defy the numbers. Holding onto that hope keeps us moving forward, even as we adjust to this new chapter.

The transition from a world-class hospital to hospice at home is humbling in ways I can’t fully explain. It’s a shift from fighting tooth and nail to learning how to let go, at least a little. Taking your foot off the gas, even slightly, feels counterintuitive after months of battling this disease with everything we had. But hospice isn’t giving up, it’s prioritizing Ali’s comfort and dignity. Even so, the emotional weight of this shift is overwhelming at times.

We’re still finding our rhythm in this new phase. Monday morning was especially tough. Ali seemed trapped in a trance, lost in hallucinations that began on Sunday and worsened overnight. It was nerve-racking to watch, so we reached out to Faith, our hospice nurse. She reassured us that these symptoms, hallucinations, fidgeting with unseen objects, or pulling at clothes and bedding, are normal at this stage. She recommended Haloperidol to help ease these episodes, and we’re giving it a try.

Ali is currently managing nearly 20 active prescriptions, a mix of scheduled doses and “as needed” medications. While she can handle liquids easily, capsules and tablets are much harder for her to swallow. When they get stuck at her stomach blockage, she ends up vomiting, which is incredibly frustrating for her. I’ve been working with Faith to switch some medications to liquid form, and if that’s not possible, our backup plan is to grind the pills and dissolve them in liquid. It’s a lot to manage, but worth it if it helps her.

Monday morning’s visit from Faith was another step forward. She checked Ali’s vitals and guided us through the abdominal paracentesis procedure. For now, Ali’s sister and I are observing and learning, but soon we’ll handle it ourselves. It’s a sterile process, done in the tight confines of a small room, but we worked together like a team. At home, we can only drain two liters of fluid at a time to avoid dehydration, so this will likely become a daily routine. In the hospital, they could safely remove more fluid with IV support, but at home, it’s slow and steady.

Tuesday brought progress but also challenges. We’re working to confirm which medications can be switched to liquid form, and the 24-hour on-call nurse visited that evening to help us sort out Ali’s prescriptions. With around 20 medications and the shift from Vanderbilt Hospital to Aveanna Hospice, we lost the convenience of the Vanderbilt Hospital app, which no longer updates Ali’s records. I’m searching for a new app to help track her medications and fill that void. Despite the complexity, we’re making headway and should have things sorted in a day or two.

After adjusting Ali’s medications on Monday, her condition noticeably improved on Tuesday. The trance-like state and hallucinations that plagued her earlier were gone, and she experienced minimal nausea or vomiting, a huge relief. It’s reassuring to know her current dosages are working for now. We’ll keep them stable unless new side effects arise, at which point we’ll reassess and make changes as needed.