Graham's Gtube Feedings

We recently had to change Graham's recipe for his gtube feedings because of the progression of the kidney disease. He needs a diet low in protein, phosphorous, and potassium. The doctors would have preferred to put him on a "renal formula" but Graham doesn't do well on formula. The nutritionist with the kidney clinic has been very helpful in creating a blend of real foods that meets Graham's needs. Though she is inexperienced at creating blenderized diets, she is willing, and she does have the nutritional knowledge that I lack. I mean, what is phosphorous, anyway?

-- Note -- If you don't have a child with a feeding tube then this will likely bore you.

A Little Background:
Graham got his feeding tube placed in December 2014, in the middle of his 6 month hospital stay at Duke. He needed to grow for his lungs to get better and at the time he was not allowed to eat by mouth because of the risk of aspiration when we had his bipap on. (He received the trach in February 2016). He was started on a commercial formula (many different kinds) and for the next four months he was miserable. He was in pain. His reflux was out of control. He vomited frequently. He was put on several GI meds to help him tolerate feeds. We were told he had delayed gastric emptying. We were forced to attempt feeding him in his jejunum (jtube - intestines - bypassing the stomach). This meant 3 trips to radiation to place the jtube. We would turn off the feeds and within an hour he was sitting up and ready to play. Restart feeds and he was miserable.

All the while I was begging the doctors to let us give him real food instead of formula. Graham had been eating real food for 2 years and never had problems like this. However, Duke hospital DOES NOT ALLOW REAL FOOD through feeding tubes. I asked if we could create blends at home. No. Could we give him packaged baby food. No. Could the hospital blend food for him. No. Finally I discovered Liquid Hope, a whole foods blended formula, commercially produced by Functional Formularies and FDA approved. After a few weeks of begging, Duke finally let us try it. He was instantly a different child. More energy. Pain gone. No vomiting. Reflux manageable. Thank you, Jesus. A couple weeks later, he was discharged. Real food was a game changer for Graham.

Since Graham was discharged from Duke last year we have switched most of his specialties to UNC. The two main reasons for this are that the pulmonologist at UNC allowed him to switch to the Trilogy vent (Duke would not) and UNC allows and even supports blended diet, even while inpatient!

New Renal Friendly Recipe:
Graham was on Liquid Hope blended with avocado and coconut oil for a year. The Liquid Hope is intended for adults and is too high in protein for children so we had to add some things to make it appropriate for a toddler. Just last week they finally released a new pediatric version called Nourish! However, we still have to add some things for Graham because of his new diet restrictions with the kidney disease. It took us a few attempts to get a recipe that blends well and is the right consistency to use the feeding pump. We are now modifying his bags (for infinity pump) to allow for a thicker blend.

Graham's current recipe:
1/2 packet Nourish
1 cup applesauce
1 cup fruit (peaches, pears, berries)
1/2 cup rice cereal (Beach Nut brand b/c of low potassium)
8 ounces juice (grape or apple)
1 tbsp olive oil
1 tbsp coconut oil

Soap Box:
Tube-fed children deserve real food. In fact they desperately need it to heal and be healthy. Commercial formulas are mostly high fructose corn syrup and fake nutrition. But doctors stick to it because they can track calories and its easy. Please, if you have a loved one that is tube-fed consider a blenderized diet. If your doctors don't support it then find ones who will. I continue to hear from countless families whose children are vomiting and miserable and not growing on formula. Children who are fed via jtube or who have surgeries to prevent vomiting or who are on multiple meds to tolerate formula. Some children have legit GI issues or other special reasons that make formula their only or best option. But many children do much better on real food! The medical field needs to change how tubies are fed but until they do it is up to parents to find a better solution for their children. And you can do it!

I am happy to discuss anything about tube feeding with you. Her are a few resources if you want more info about blenderized diet for tube feeding.

functionalformularies.com
www.foodfortubies.org

Facebook groups:
Blenderized RN
Blenderized Food For Tubies

Ben taking Graham's blood pressure!

How to modify Infinity bags for thick blends.