It’s Tube Feeding Awareness Week from 5 to 11 Feb.
Mum, Kate shares the story of her daughter Liv.
Liv is turning 8 during Feeding Tube Awareness Week!
Liv is a beautiful girl that loves nothing more than to dance, play with her sister and friends, and watch scary movies or go on a ghost tour.
Liv started her feeding tube journey as she was born at 35 weeks, and came home at 5 days old gravity fed, I thought at 13 days when it was removed that would be the end of our journey, however Liv had the NG (nasogastric tube) for short times throughout the first 4 years until it was decided just before Christmas when she was 4 that she would need it to maintain her sugar levels and get a bit of normality in her life back.
Liv has since been diagnosed with ARFID (Avoidant/Restrictive Food Intake Disorder), ketotic hypoglycaemia, FTT (failure to thrive) as well as an array of other conditions. She had a NG tube for 3 years before we swapped to a PEG (percutaneous endoscopic gastrostomy) in November last year. She has 4 bolus gravity feeds a day which provides her daily nutrition, and a pure carbohydrate at night to maintain sugars.
Without the tube Liv has just not woken up before as her sugars were so dangerously low. On bad days we are able to use the tube to keep Liv out of hospital which has meant we can have a better quality of life.
Liv doesn’t allow her tube to define her. She dances competitively, attends mainstream schooling, she’s swam with sea turtles in the great barrier reef, and been on rollercoasters in the Gold Coast.
Reposted with permission by ausEE Inc. www.feedingtubeaware.com.au
