3rd Day In Hospital: Continued Monitoring, Severe Malnutrition Diagnosis, And TPN Treatment Plan (November 8-9, 2024)

November 9, 2024:

Ali’s intestinal blockage remains under close observation. An x-ray taken around midday revealed some additional reduction in the blockage, but it’s still obstructing part of her GI tract, so they’re not ready to discharge her just yet. She’s still on a full liquid diet, and she’ll continue with that until she can tolerate solid food without experiencing nausea or vomiting.

To address her severe protein-calorie malnutrition, the team is recommending that Ali start on Total Parenteral Nutrition (TPN) this week, ideally before she’s discharged. TPN provides all essential nutrients directly into her bloodstream, bypassing her digestive system altogether. This way, she can get the calories and nutrients she needs without relying on food intake. She’ll still be able to eat if she feels up to it, but the TPN will relieve the pressure of having to consume enough food to meet her energy needs.

Setting up the TPN requires another semi-permanent line, as her current chemotherapy port can’t handle the demands of both treatments. This new access line will be installed in her arm, and Ali chose her right arm, considering she already has her chemo port on the right side of her chest. This setup should let her sleep more comfortably on her left side.

Usually, a TPN cycle runs about 12 hours, but because of Ali’s ongoing fluid buildup from ascites, they’ll need to slow the infusion down even more. The exact duration will depend on her specific nutritional “recipe,” which they’re still finalizing.

With this approach, Ali will be connected to a nutrient infusion for the majority of each day, likely for the foreseeable future. Adding this to her at-home care routine is a big commitment, but she’s fully committed to the plan, and I couldn’t be prouder. She made a huge decision... the right one, and we’re ready to take it on together.

They expect Ali’s hospital stay to extend through most, if not all, of next week, as fine-tuning her TPN formula will take some trial and error. Once they’ve set up the IV line and connector, they’ll begin the nutrient infusion. Since each infusion runs for over 12 hours, adjusting the formula to match her exact needs will likely take a few days. According to the nurse, Thursday is probably the earliest they’d consider discharging her.

In the middle of all this, I also connected with Jenna Erickson, a Certified Child Life Specialist (CLS). Jenna’s job is to support families through the cancer journey, especially by helping kids understand what’s happening and preparing them for hospital visits. I plan to bring the kids to see Ali more often and I felt something like this would be really helpful. Jenna will be there to guide the visit and make it feel like a mini field trip, which I think will help make it easier for both Liam and Avalynn.

I left the hospital around 7:00 PM when Ali’s sister arrived to take over for the night. I’d been there since early morning, and I wanted to spend some time with Avalynn and Liam before they went to bed. I've made it a nightly ritual to FaceTime Ali right before bedtime when she is in the hospital, and the kids light up every time they see their mom.

November 8, 2024:

After dropping Liam off at school on Friday morning, I headed over to Vanderbilt Hospital to work remotely and spend the day with Ali. Her doctors and nurses have been keeping a close watch on her blockage, and they’ve planned another x-ray for tomorrow to assess how things are progressing.

Thankfully, they’re already seeing some minor improvement, which is a hopeful sign that surgery might not be necessary. If she can avoid surgery, it’ll mean fewer recovery days at home, so the team is committed to exploring every non-invasive option before even considering a more drastic step. Both Ali and I are relieved to see them prioritizing a cautious approach rather than rushing into surgery.

Right now, Ali is on a full liquid diet. Earlier, they’d let her try some solid foods, but the nausea and vomiting became too overwhelming, so they had to pull her back to liquids for now. The doctors mentioned that she now meets the criteria for severe protein-calorie malnutrition, which has been building over her extended struggle to keep down solid food. This malnutrition level is critical because, without intervention, it could impact her ability to undergo chemotherapy.

Hitting this threshold has set off an urgent push to create a nutrition plan designed to stabilize her weight and strengthen her, even if she isn’t able to eat much on her own. Ali's medical team is working quickly, and they’ve assured us that a structured nutrition plan should be ready by tomorrow.

Thank you so much, Dave, Jackie, Jasper, and Celine, for the beautiful flowers. They’re brightening up Ali’s room and lifting her spirits every time she sees them.