My Tubie Stories
Story contributed by Juliette; February 2023
It wasn’t until the 18th of February 2021, 3 weeks after being discharged that he was rushed back to hospital by ambulance due to not breathing during a breastfeed. We spent 3 days in hospital before we were discharged. A couple of days later l was on my way to Sydney's Children hospital for a cardiologist appointment when he stopped breathing in the car. When we got to the ED they asked me to show how he feeds, two sucks in and he stopped breathing, needing to be bagged and suction. Within 30 minutes of arriving Angus had a feeding tube placed and was deemed too dangerous to feed and was now NIL by mouth. It wasn't until a few days later after many tests that we found out Angus has a very dangerous suck and swallow which nearly killed him as he was aspirating into his lungs. We spent many weeks there working out what was wrong with him, and that's when we found out he would be going home on oxygen and NJ feeds 21 hours a day (due to really bad reflux, central apneas, dangerous suck and swallow causing aspiration and failure to gain weight). From July 2021 he had a PEG placed and fundoplication that nearly killed him and he ended up in ICU on ventilation fighting for his life. Then he got an infection in it that made him really sick. Then in October 2021, his PEG was changed to a PEJ while he was awake. He has been diagnosed with Cerebral Palsy Bilateral, fatigable clonus, Spasticity and Dystonia (dyskinesia) and over ten other medical/disability conditions.
Find out more about The Travelling Tubie Project’s nasogastric and oxygen tapes here. You can follow their travels on Facebook: The Travelling Tubie Project and Instagram: the.travelling.tubie.project Story contributed by Chloe; February 2023
Jess's Story (Parent Advocate)
Hunter and Rory
In the NICU we were taught to feed her with the tube and it became less scary.Eventually we got home but for unknown reasons she was not feeding well and allergic to everything, repeatedly for the first 18 months of her life she had tubes in her nose (nasogastric) and then just before age 2 she was changed to a permanent gastrostomy tube for enteral feeding. Dusty was not diagnosed until age 5, she has a rare chromosomal disorder meaning she has missing genes as well as extra genes where they don’t belong. If it wasn’t for her feeding tube she would not be alive today, as it took so long time to find her rare disease, no doctor could anticipate what would be wrong with Dusty or how to treat until it was happening.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
Story contributed by Tashana; February 2020
Story contributed by Emma; November 2018
Story contributed by Lisa; January 2018
Imogen needs more surgery for tonsils and adenoids removal (this will be her fifth surgery) and she will also be scoped again while she’s under GA to test again for an EGID since that hasn’t completely been ruled out yet. She’s still 100% tube fed but will occasionally nibble on a Twistie if she’s not feeling too nauseous. She is struggling quite regularly with her GTube and her gastroenterologist has already warned me that we may be looking at a JTube sooner rather than later, unfortunately.
In terms of her development, she’s hit so many milestones this year! She’s started walking, she can say about 10 words and I’ve started teaching her keyword signing which has helped with her communication tremendously. We are looking forward to what the next year will bring!! Story contributed by Melissa; November 2018
Story contributed by Shaz; November 2018