One of the most significant challenges for families with a loved one with a feeding tube is finding the right “formula” for their Tubie. When my son became a g-tube fed child in 2016, we struggled to find the right food to feed his button. Over the course of 18 months, we tried several formulas that were prescribed by our doctors. The primary issue we noticed with our son was his inability to tolerate the volume of formula needed to get him the calories he needed daily. To get him enough calories, we were forced to give him the majority of his food overnight via continuous feeds.
During the day, he only received about 500 calories of formula, and we noticed his energy levels were poor, he was uncomfortable and full of gas, and his stomach was distended so much it would impede in his ability to play. Our breaking point was in the summer of 2017. We were at the beach with our son. He splashed and played in the water, and I looked over at him, and his lips were blue. His breathing was fast, and I noticed that he was violently shaking his head. My son is unable to burp on his own, and he was choking on the gas that his food was creating in his stomach. We had to pull him from the water quickly and vent his stomach. That single trip to the beach we spent the bulk of the time on a blanket with a syringe venting the gas in his stomach. It was then I realized we needed to make a change. Gastroparesis was making his life miserable and I knew he needed something else.
I knew about Blenderized diets, but I wasn’t sure I had the time to blend food each day adequately. I began to research other options for food, and I found a product called Real Food Blends. Several mothers, I knew in the feeding tube community recommended the diet. I reached out to Real Food Blends to ask them questions about the food, and they directed me to their website to answer a number of the most asked questions.
My other concern was if the food would be covered by our insurance and if our DME supplied the food. I made a quick call to our DME and our insurance, and I found we could order it monthly and our insurance plan covered his food. (We did have to try other brands of formula to prove he could not tolerate the food before they would cover)
Once I was comfortable with the information I learned about the food, I talked to his doctor about moving him to Real Food Blends. Because the food does is not “nutritionally complete” we did have to add a multi-vitamin to his day. We also were told to add a dash of salt to ensure he got enough sodium.
We started the journey in early fall this year, and within a week we were able to transition him off nighttime feeds. He had a lot more energy during the day, and he didn’t need to be vented as frequently. His stomach overall seemed a lot happier, and he was able to tolerate larger volumes of food. Our journey was not without some hiccups as we had to learn feeding schedules, the amount of time for his feeds, and the quantity of each feed. However, now we are running his food via his pump 3-4 x a day, and he’s the happiest he’s been in a long time. (Real Food Blends does indicate that the blends are not “approved” to run via pumps – but we were able to learn how to dilute it enough to get it to run quickly over an hour)
Because our lives have changed so much since our start with Real Food Blends, I thought this would be a great time to offer my readers the chance to try the food for free. With the beginning of 2018, I am offering “New Year – New Tubie” and giving away 2 Sample packs of Real Food Blends to two families that would like to try but have not tried the food yet.
The sample pack includes one of each of their blends. The pack includes:
1 Beef, Potatoes, & Spinach
1 Salmon, Oats & Squash
1 Orange Chicken, Carrots, & Brown Rice
1 Quinoa, Kale, & Hemp
Nutrition Information is available here
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