This week is about bringing everyone in Australia together who has a feeding tube, whatever the reason may be.
This is our boy Conor he is 4 in April and has had a feeding tube since 15 months. NG tube for 2 years which became a GJ in August 2017.
Perfectly healthy until 15 months then one day randomly started vomiting up to 10 times a day and we were in hospital for 5 weeks. 2.5 years and many tests later we're still no closer to a diagnosis.
All we know is that his gastrointestinal tract has delayed motility and consequently, he has lost all his oral eating skills and has forgotten how to chew and swallow food.
Other than that, he's a healthy beautiful chatty kid and we look forward to him starting kindy this year!
Story contributed by Lisa ; January 2018
This is my tubie Imogen, born on 15/01/17. She started struggling with feeding from birth and was rapidly losing weight. When she was exactly 3 weeks old her NG tube went in. The doctors told me it would only be temporary, just until her feeding improved then it would come out. Well her feeding only got worse and by the time she was 12 weeks old, had stopped feeding orally completely. She continued with the NG until just before she was 8 months old and that's when she had her first gastrostomy for a PEG tube. She had that first PEG for 2 weeks then it dislodged so had emergency surgery for a second PEG. After a week we went for our follow up appointment with the surgeon and she noticed the PEG was moving and being pushed out by her body, especially when she vomited which is multiple times a day. So, the surgeon made the decision to do emergency surgery again to change the PEG to a button as she thought it might hold better in the stomach, she said it was only a matter of time before the PEG dislodged again. The next day Imogen had her third surgery to place her button and so far there's been no complications with the button (apart from some persistent granulation tissue). Imogen's had many diagnoses throughout her first year but we still don't have all the answers. She has been diagnosed with severe GERD, gastroparesis, allergic colitis, severe oral aversion, dysphagia, suspected aspiration and sensory issues. Imogen does have an excessively high level of 4-hydroxyphenylacetate in her urine, which can be excreted in excess in short bowel and bacterial gut overgrowth syndromes however we do not have an official diagnosis. She has also been scoped for EoE which was negative however since she was elemental and on PPI for her scope it can't be ruled out completely yet. She has had a rough year, she is 100% tube fed and still vomits constantly but is still quite happy most of the time.
Story contributed by Melissa ; January 2018
Medikidetz explain Home Enteral Nutrition written by Doctors for kids!
ausEE has copies of this comic book to distribute to families that have children with feeding tubes.
To help our charity to cover the postage costs it would be appreciated if you could kindly make a $2 donation for 1 copy or a $5 donation for up to 4 copies to be posted to you. Tax deductible donations can be made through our gift shop and please mention how many copies you want in the comments field when making your donation.
If you are not in a position to help with postage costs please do still Contact us as we will still post you a free copy at no cost.
Page last modified: 29 January, 2018