Transitioning To Hospice Care And Managing At Home (November 21, 2024)

Today has been one of those days where every moment feels significant. After yesterday’s difficult news and the big decisions we had to make, we started the day emotionally wiped out. But life doesn’t pause, and neither does Ali’s care. As overwhelming as it’s been, there’s a kind of comfort in seeing everything begin to come together, even if the path ahead feels heavy.

This morning, we were visited by Jenna Erickson, the Certified Child Life Specialist (CLS) at Vanderbilt Hospital. She brought materials to help us talk with Avalynn and Liam about the next stage of Ali’s care… hospice. These conversations aren’t easy, and honestly, I don’t even know where to begin most of the time. But Jenna gave us tools that feel approachable and age-appropriate, so the kids can start to understand what’s happening in a way that doesn’t feel so scary or overwhelming for them. I’m grateful for her kindness and expertise; it’s a tough job, and she handles it so gracefully.

The big medical step today was the installation of a tunneled peritoneal drain. This is a game-changer for Ali’s comfort and quality of life. Over the past few months, she’s needed repeated abdominal paracentesis procedures at the hospital to drain the fluid buildup caused by her cancer. It’s an exhausting and uncomfortable process, not to mention emotionally taxing with all the hospital visits. The tunneled drain is a flexible silicone tube that stays in place in her abdomen and allows us to drain the fluid at home, as often as needed. It was installed in the lower-right quadrant of her abdomen, and during the procedure, they drained another five liters of fluid.

It’s staggering to think about how much fluid she’s been carrying around and how often it’s had to be removed. This confirmed for us that choosing the permanent drain was absolutely the right call. While it’s another adjustment, it’s also a huge relief to know she won’t need to go back to the hospital for this anymore.

Meanwhile, preparations at home have started to make things more comfortable for Ali. Around noon, Cornerstone Health Systems delivered a hospital bed and set it up in our bedroom. It’s hard to see this physical change in our home, it’s a stark reminder of how much things have shifted, but it’s also reassuring to know that Ali will be more comfortable.

Later in the afternoon, a nurse from Interventional Radiology came up to Ali’s hospital room to teach me how to manage the new drain and swap out the paracentesis bags. It’s definitely a lot to take in, but the nurse was patient and thorough. I feel a little more confident about handling this myself now, which is a relief because it’s such a key part of her care moving forward.

Another nurse came by around 5:00 PM to remove Ali’s PICC line. Originally, the line was placed for Total Parenteral Nutrition (TPN), but after much thought, Ali has decided not to continue with that treatment. Instead, she’s prioritizing managing the fluid buildup and focusing on comfort over aggressive nutrition interventions. It was a hard decision to make, but it feels like the right one for this stage of her journey.

One of the logistical challenges of the day was getting all of Ali’s medications sorted. Over the course of her hospital stay, her medication regimen has been tweaked so many times, it’s been nearly impossible to keep track of it all. Thankfully, Vanderbilt Hospital ensured that everything was documented and transferred over to Aveanna Healthcare, so the hospice team now has the most up-to-date information. It’s one less thing for us to worry about, and I’m grateful for that level of care and organization.

By 6:00 PM, Ali was discharged from the hospital. Having her home again feels both comforting and bittersweet. There’s something grounding about being back in our own space, but it also marks the beginning of a new chapter.

At 6:30 PM, the hospice care director from Aveanna Hospice arrived for our first in-home session. This wasn’t the nurse who will be caring for Ali regularly… that introduction will happen tomorrow, but the director walked us through what to expect and answered all of our questions. She was kind, patient, and understanding, which helped ease some of the anxiety we’ve been carrying about this transition. Knowing there’s a team in place to help us navigate this is a huge relief.

Tomorrow, we’ll meet the nurse who will be with us moving forward, and we’ll begin settling into a routine with her care. For now, we’re taking things one step at a time. Ali is home, resting, and as comfortable as we can make her. It’s hard not to feel the weight of everything right now.

Thank you to everyone who has been reaching out with messages, prayers, and support. It means so much to us, even if I don’t always have the energy to respond right away. Just knowing that we have this community around us is a source of strength, and we’re endlessly grateful for all of you. Keep holding us in your thoughts as we step into this next phase. We’ll continue to keep you updated.