Stories about: total parenteral nutrition

‘An easy decision’: Finding care for short bowel syndrome

care for short bowel syndrome

Allie DeRienzo loves to dance, sing and play with her big brother, switching from the pink-and-purple cartoon world of Shimmer and Shine to the action-packed fantasy of Star Wars with the blink of an eye. It’s a flexibility that has served her well: In just a few years, she’s endured more ups and downs than most 3-year-olds.

Although her pregnancy was normal, it became clear as soon as Allie was born that something wasn’t right. “She was incredibly distended and was transferred almost immediately to a high-level neonatal intensive care unit (NICU) in New York,” remembers her mother, Nanci.

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Miles to go: From Mississippi to Boston for life-saving care

ileal atresia

Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.

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A labor of love: Life with total parenteral nutrition

By Kathryn Michalski

Peter

When my son Peter and I go out, it’s not unusual for people to fawn over him a bit.

“What a happy kid.” “He’s so smart.“ “It makes me smile when I see him,” we often hear. As a mom raising a child with as many health issues as Peter has faced, these comments brighten my day.

Peter was born with an arteriovenous malformation (AVM) in his liver, meaning his veins and arteries weren’t connected properly. When he was just seven months old, the AVM completely disrupted the blood flow to his liver and small intestine, causing multiple holes in his small intestine. He became gravely ill after that. At our local hospital, Peter had one surgery to remove the AVM and three more to salvage what was left of his intestines.

When it was all over, Peter had four ostomies (a surgical opening made in the skin as a way for waste products to leave the body) and a gastrostomy (a surgical opening into the stomach, where a feeding device can be inserted). He couldn’t digest food properly, so he had to receive all his nutrients intravenously (IV), through a medication called total parenteral nutrition (TPN).

Having a child on TPN is a lifestyle, for both patient and parents. It requires refrigerating IV bags and medications, and storing huge amounts of tubing, caps, alcohol preps, pumps, dressing change kits, and other supplies. There is a daily ritual of preparing the medicine and hooking it up, and because TPN requires a permanent central line for IV access, there is always a risk of infection that needs to be closely monitored.

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