100 ft level – Since the last update in November, 2025:
Nichole bravely underwent the placement of an NJ tube, but unfortunately, it did not go as hoped. Her body reacted negatively, causing her to cough up large clots of blood, leading her to make the difficult decision to remove it herself at home.
She had a Central Venous Catheter placed in December, which allows her to receive TPN (total parenteral nutrition) essential for her well-being. This method provides her with 95% of her daily intake, ensuring she gets the nutrients she needs. However, she struggles to keep it running for the full 12 hours due to severe back pain caused by wearing the backpack. For a touch of normalcy, the remaining portion of her nutrition comes from a small shake made of chocolate almond milk, cocoa powder, half a banana, peanut butter, and ice, adding a simple pleasure to her routine.
Two weeks ago, we met a new Internal Medicine doctor at Olmstead Medical Center, who listened to her concerns and referred Nichole to palliative care, showing her commitment to improving Nichole’s quality of life.
A week later, Nichole met with a palliative care doctor to discuss her situation, with a social worker providing additional support. The social worker is also scheduled to visit our home to discuss in-home care services for Nichole’s needs. Nichole will be having twice weekly skilled nursing visits along with home health aid assistance. The plan is still in development but we should have more info next week.
Nichole is striving to maintain a positive outlook on her life and health, yet it becomes increasingly difficult each day. The emotional toll is heartbreaking. Currently, there is no clear plan to determine the root cause of her GI failure, which is crucial for her to regain the ability to eat and move away from TPN. She often feels drained and suffers from severe pain in her neck, back, shoulders, and head. However, the past week has offered a small glimmer of hope for improving her overall quality of life.
