11th Day In Hospital: Total Parenteral Nutrition (TPN) Duration Adjustment And Nasogastric (NG) Tube Removal (November 17, 2024)

Last night, around 10:00 PM, the medical team transitioned Ali from a 24-hour Total Parenteral Nutrition (TPN) cycle to a new 16-hour one. On the surface, it might seem like a simple adjustment, but it’s actually a significant step forward. This change is part of preparing us for the possibility of managing these treatments at home. By shortening the cycle, Ali will have a little more downtime between sessions, a small but meaningful glimpse of the rhythm we’ll need to settle into when her care shifts more into our hands.

For those who may not be familiar, Total Parenteral Nutrition (TPN) is a way of delivering vital nutrients directly into Ali’s bloodstream because her body struggles to absorb them adequately through her digestive system. These treatments have been keeping her going, especially as she battles this persistent blockage.

Ali’s weight loss is another reminder of the toll this has taken on her. Back in April 2024, just before her diagnosis, she weighed 113 pounds. At her last weigh-in, she was down to 78 pounds, a loss of 35 pounds in under seven months. This shift underscores why every aspect of her care must be so closely monitored. Blood counts, metabolic functions, and key minerals like magnesium and phosphorus are checked regularly, because even the slightest imbalance can have a significant impact. It’s an intricate balance, and we’re doing everything we can to support her through it.

In addition to the Total Parenteral Nutrition (TPN) adjustment, last night the medical team ran what they call a “gravity trial” on Ali’s nasogastric (NG) line. For those unfamiliar, the NG line is a tube that runs from her nose, down her throat, and into her stomach. It’s usually connected to continuous or intermittent suction to help drain fluids her stomach can’t process on its own. The gravity trial involved disconnecting the suction and letting gravity handle it instead, as a way to see how well her body manages without mechanical assistance.

To our relief, Ali handled the trial well, and the team decided to remove the nasogastric (NG) line entirely afterward. While there’s always a chance she may need it again if fluid starts to build up, for now, it’s gone. Ali absolutely hated that tube, so even if this reprieve is temporary, it feels like a small but meaningful win. Her face when they removed it was worth every second of the discomfort it took to get to this point. They even wrote "Tom The Terrible Tubie" on Ali's board. Hahaha.

Days like this remind me of the extraordinary precision and care that go into every decision about Ali’s treatment. Every adjustment, every small trial, every test, it’s all done with her best interest in mind. It’s overwhelming at times, but I’m endlessly grateful for the medical team’s expertise and their constant support. And even more, I’m grateful for Ali’s strength and determination.

Being by her side feels like the most important thing I can do. Whether it’s holding her hand through a procedure, asking questions to make sure I understand every detail, or just sitting with her in silence when she needs a moment, I wouldn’t want to be anywhere else. This is where I need to be, and more importantly, it’s where I want to be. We’re in this together, and every step forward, no matter how small, feels like a step worth celebrating.