Day 4 - We are family

"Family is the most important thing to us"

Owen is eleven, he’ll be twelve during home artificial nutrition (HAN) week, 12th August.

Currently Owen receives his nutrition and hydration via two artificial feeding routes. For twenty hours a day he has continuous feeding via his percutaneous endoscopic gastrostomy (PEG) and six times a day he receives his medication via the same route. In addition to this Owen has overnight intravenous fluids via his central venous catheter (CVC). Every two weeks his blood is checked to keep a watchful eye on his kidneys and liver function. The hospital also pays close attention to his vitamin levels etc., to ensure he’s not deficient in anything or to catch the early signs of change. I take his bloods and they then go off to the hospital.

Owen attends a special needs school in Mansfield, Nottingham. He has cerebral palsy, chronic kidney disease and ultra-short bowel syndrome. He has a warm beaming smile; he loves hydrotherapy swimming, bowling and shopping. He is part of a loving a close-knit family; there is me (mum Tara), dad Jason and his exceptional caring and helpful fourteen-year-old big brother Ryan. We enjoy our family time at home as well as day trips to local parks; feeding the ducks is a favourite. We take nothing for granted; we are extremely grateful for his artificial nutrition. Without it Owen wouldn’t be able to survive and enjoy life.

Family is the most important thing to us, we do all of Owen's care, 24/7. I replace his PEG tube if it comes out or a new one is needed. Setting up his intravenous fluids and medication is second nature now - it’s part of family life and Owen’s essential world of survival. We’re grateful for HAN and all the support we receive. It’s also nice to share our experiences with others who may be starting out on this journey.

Tara, Owen's proud mum

HAN Week