5th Day In Hospital: Nasogastric (NG) Tube Installed And Second Total Parenteral Nutrition (TPN) Treatment Started (November 11, 2024)

Ali was recently transferred from the Critical Care Tower to the north wing of the main adult hospital. The new room is a bit smaller, but the nursing staff here has been consistently attentive and compassionate. One unexpected source of comfort has been the connection we discovered between our family and the care team. Keith’s coworker has a sister who works as the overnight charge nurse on Ali's floor. Meeting her before leaving for the night left me reassured... knowing both Ali’s sister and someone we trust were there, keeping close watch on her all night.

Ali’s GI tract hasn’t been able to clear itself naturally, so the team placed a nasogastric (NG) tube through her nose, down her throat, and into her GI tract. This setup is helping drain the fluid build-up that’s been causing her relentless nausea. So far, they’ve removed a total of 1.2 liters. In a way, this mirrors her previous abdominal paracentesis procedure, except it’s internal... drawing out the excess fluid from within, helping to ease her discomfort.

One of the brighter moments in an otherwise tough day was Liam’s first visit to see Ali in the hospital. Beforehand, we met with Vanderbilt’s Child Life Specialist, Arielle Silverman, who brought activities and resources to help put him at ease. Arielle went the extra mile... she’d learned about Ali’s treatments so she could explain them to Liam in a gentle, kid-friendly way. It was a much-needed bit of warmth in Ali’s day, and seeing Liam’s face light up when he walked in was priceless.

Pain management remains a struggle. Ali’s on a Total Parenteral Nutrition (TPN) line, which is giving her a 24-hour infusion packed with protein, sugar, electrolytes, vitamins, and water to keep her strength up. But despite this support, her sleep is constantly interrupted by muscle twitches and jerking that make rest hard to come by. Today, her doctors adjusted her pain medication again, adding a stronger pain patch to her upper back. This patch is designed to release pain relief gradually, hoping to provide a steadier buffer against the persistent ache. We’re all hoping this new setup will give her body and mind some of the relief she needs in the days ahead.