Ganelle & Kellen's Tube Feeding Story
Talking Tube Feeding speaks to Ganelle and Kellen to find out more about their tube feeding experiences.
This is the first entry of Talking Tube Feeding's 'Family Diaries' series, which will regularly share family stories and tube feeding journeys.
Contributing family: Ganelle (mum of 5-year-old Kellen)
Feed via: PEG tube and low-profile feeding device
Fun fact: Kellen has a brother and sister that live with him and his mum. In their free time, Ganelle and Kellen love immersing themselves in outdoor activities, doing as much walking, cycling and swimming as they can.
Meet Ganelle and her 5-year-old son Kellen as they share their tube feeding experiences.
Kellen has been tube fed since birth (2016) as a result of his gastro-oesophageal reflux disease. Kellen’s reflux disease led him to tube feeding as he had a vulnerable swallow, which put him at risk of aspiration. Kellen had a Nasogastric (NG) tube inserted and initially started on a formula feed. In January 2019, he had a PEG tube inserted, followed by a low-profile feeding device insertion a few months later in April 2019. Since then, Kellen has been on a full blended diet.
Here are some top tips from Ganelle about tube feeding and blended diets, which are helpful no matter which stage you are on the tube feeding journey! Remember, this is what worked for Ganelle, but you should speak to your enteral feeding dietitian before starting your child on a blended diet, so they can ensure all nutritional needs and other safety factors are met.
1. Try a blended diet (if you can)
Please do remember that blended diets may not be suitable for everyone and it’s important to discuss this option with your dietitian beforehand. However, from Kellen’s experience, I would recommend speaking to your healthcare professional about exploring a blended diet (if your child can be on one) – it’s not necessarily as complex as it may seem. I initially explored the option when a friend’s child was on a blended diet at the time. I also heard about it from Kellen’s dietitian and together we worked out a plan.
You may be feeling nervous beforehand, and that’s completely normal. I felt worried at first too… what if I give Kellen too much food? What if I don’t give him enough food? All these thoughts sprung to my mind but working closely with your dietitian will help to overcome these concerns and ensure any other safety factors are met.
For Kellen and me, it was simply a matter of starting slowly – we started by slowly introducing the blends, for instance only for breakfast, and over time we gradually added dinners. Eventually we incorporated some options for lunch as well as some snack options too. Within weeks Kellen was already consuming breakfast, lunch, snacks and dinner, which was a great achievement. Being on a blended diet also drastically reduced Kellen’s reflux symptoms, which was an additional bonus for us.
2. Finding the right regime for you may take time, but that's normal!
Always work closely with your dietitian to explore your options and raise any concerns that you may have, until you find the feeding regimen that works for your child.
A particularly challenging part of Kellen’s tube feeding journey was when his NG tube was first inserted. At this time Kellen was just on a formula feed, which was difficult as I had to ensure that I was understanding the right formulas that Kellen could tolerate, whilst also understanding the correct volumes to feed. There was a lot of information to learn and grasp, especially understanding how to insert the NG tube. It was only after we replaced Kellen's NG tube for a PEG tube, that I was able to explore the option of a blended diet, which unfolded so many great opportunities for Kellen and me.
3. Kellen's top picks
My favourite aspect of Kellen’s blended diet regimen is that I can easily turn his favourite meals into a blended diet recipe. I simply bring out the blender and serve him a blended meal that he can enjoy. Being able to serve Kellen similar food that I’d serve myself or any of his siblings (just in a different way) is fantastic and keeps Kellen included in family mealtimes.
For breakfast, Kellen enjoys having cereal, blended with some fruit. For his main meals, Kellen has anything from spaghetti Bolognese to a mid-week Sunday roast dinner which is packed with a huge variety of nutrients, protein, and vegetables. Be sure to check with your dietitian beforehand to see if these food options are suitable for your child’s feeding regime.
A helpful tip with blended meals is to bulk prepare the blends in advance if you can. I dedicate one shopping day to buy all the ingredients, which will allow me to cook a variety of about fourteen meals in one go, lasting for a comfortable few days before it’s time to blend a new batch of meals.
For more tube feeding experiences and stories from other families, stay tuned for the next ‘Family Diaries’ entry.
If you are looking for blended diet meal ideas, why not try some of Kellen’s top picks? You can also click here to explore some other blended diet recipe options. Please remember to consult your dietitian before trying the blended diet recipes to ensure they are appropriate for your child’s feeding regimen.
If you are unsure about any of the tube feeding terms, click here for our glossary of tube feeding terms.