Feeding Tube Awareness Week 2020 – Wednesday’s Topic: Benefits

What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.

 

This one’s easy… the biggest benefit of tube feeding is Henry’s alive.  Without his tube I’m not sure he would be.  He’s had several feeding studies over the years, all of which show his swallow is not strong enough to clear his airway.  He can eat some foods, which I think has made it more challenging at times, as there’s no clear “he can’t eat”.  And it’s in this grey area that people (ourselves included) are left wondering… could he eat more? Should we be “pushing” more”.

After repeated spells of soul searching, we always return to a place of honouring his body and his knowledge of what feels right and safe to him.  As he gets older, he is becoming an active partner in the conversation and we grapple with respecting his boundaries when so much of his life has been us forcing thing onto/into him in the name of “good health”.   Consent is huge for us now – when tube feeding is by it’s very nature more invasive than eating with your mouth.  In our day to day lives this has meant taking 3 months to change his g-tube last time, as he has a visceral fear of the process and we are committed to no longer holding him down with force.  It means really honouring his “no” to meals, even when my ingrained fear of returning to the ER takes over.

And throughout all this, the benefit of Henry’s tube is that all this even gets to take place.  And for that, I am eternally grateful.

xoxo, Shelley

 

Feeding Tube Awareness Week 2020 – Tuesday’s Topic: Nutrition

There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Henry eats exclusively through his food button.  All his nutrition is received through his tube and without it he very likely would not be alive today.  So it goes without saying we are so thankful for his feeding tube.  But I won’t lie – we have moments where I feel completely overwhelmed.  Those moments are fewer and farther between than they used to be.

For Henry we (read “I”) chose to do a homemade blenderized diet.  When we first started all this I hated feeding him formula from a can.  It didn’t seem like “real” food to me.  That’s a judgement, I know that, and speaks more to my feelings of inadequacy than to the nutritional content of commercial tube feeding formulas.  I couldn’t even feed my own baby… and that really triggered me.  Perhaps if we’d had a diagnosis I would have felt differently, but that’s hypothetical and I try to stay away from “what if’s”.

We continued with homemade blended meals because it turned out that Henry has several food sensitivities that made typical commercial formulas not work for him.  It was a game changer when we started blending his meals.  It was almost 8.5 years ago and I still remember the difference clearly.  He went from meals that took at least 45 minutes, frequent vomiting and us walking on eggshells, to thriving, eating more and feeling better.  We still struggle with “what” and “how much”… but as Henry gets older and plays a more active role, we are working on a new dynamic.  Trusting and consent around his body are big ideas we are working with currently.

What I do know is that thanks to his feeding tube Henry eats WAY more nutritionally balanced meals than my other son (7 years old… processed meat & raw veggies please!).  Henry’s meals provide the nutrition he needs to thrive… and that’s all this mama can ask for!

 

 

Feeding Tube Awareness Week 2020 – Monday’s Topic: Awareness

Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding

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“I was born with my muscles being a little bit weaker, so I can’t swallow foods.  I can swallow foods like ice cream, hummus, guacamole and tiny crumbs of brownie or other soft foods.  I probably eat the most vegetables out of a kid my age.  I can have conversations at the dinner table easier because I don’t have to worry about talking with my mouth full”. ~ Henry

Owen says… “Henry can’t do some stuff me and you can do. He can’t climb up a climbing wall really fast.  He can’t do a burst of speed or run really fast.  But he doesn’t have to taste yucky medicine, so that’s good for him.”

Henry was born with a congenital myopathy that results in low tone (weaker muscles).  He was diagnosis last summer (at age 9 1/2) with a genetic condition called RYR1, and a likely diagnosis of central core disease.  I say likely because clinically he presents with all the signs of this condition, however his muscle biopsy at age 1 did not show signs of this disease.  However that may have been due to his young age or the muscle they biopsied.  As a result, I had a biopsy done in Sept 2019 and we are awaiting the results (I was also diagnosed with the same condition and it’s less invasive to do a biopsy on me than Henry). From my beginning understanding of the disease, Central Core Disease can present with a wide range of severity, from “you can barely tell” to significantly reduced physical ability.  That’s how Henry and I can have the same condition but present very differently in day-to-day life.