It’s that time of year again… Feeding Tube Awareness Week! Each year during this week, I share our story to raise awareness about feeding tubes and how they have changed our lives. It’s also a beautiful time for me to reflect back on where we’ve been. We have changed a lot over the year – as a family and as individuals. But what hasn’t changed is our gratitude for, and reliance on, this life saving piece of medical technology that allows our son to eat, grow and thrive!
Awareness
Monday, February 7th
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.
Henry was born with a congenital myopathy – a muscle condition – that results in low tone, or weaker muscles. Despite years of testing, his condition remains undiagnosed. We know a lot about what he does not have, but we do not know exactly what his condition is. What we do know is that it is appears to be a genetic condition, but its origin is not in one of the “common” genetic sequences. Having said that, we are told there are thousands of obscure genetic conditions. In the last couple years we thought we were narrowing in on a diagnosis – the genetic sequencing showed a specific “blip” that seemed promising. However a muscle biopsy was “non specific”, so we’re back to where we started. It may be we never know the exact cause, however new information is being discovered all the time, so we never know.
Because Henry’s condition is undiagnosed, it also means there was no “road map” to follow – no other cases to glean information from about what to expect. As with all things, there are pros and cons to this – no precedents meant no idea what to expect. But it also meant no preconceived ideas of what he might, or might not, be able to accomplish. So as far as we’re concerned… the sky’s the limit :).
When Henry was born, he was a very quiet little guy. He did not move, did not cry, did not fuss. He couldn’t – his muscles were too weak to. Seeing him now, he’s an active, outgoing boy. His muscles are still weaker than his peers (and they likely will always be), but with some accommodations he can participate in and enjoy most of the same activities as his classmates.
Henry continues to eat exclusively through his food button (a mic-key brand, low profile gastronomy tube). Because we make his food ourselves, he may very well be one of the best-fed almost 12 year old boys we know…
…broccoli, asparagus, kale, carrots and broiled chicken for breakfast anyone…?!?
That’s not to say he doesn’t eat chicken nuggets, and chocolate cake from time to time as well. We used to follow a well planned, documented, calculated food guide when making his food. His doctors and my anxiety required the certainty of accurately measured nutrient counts. Now he gets a little of this and a little of that, with a few left overs thrown in :). It’s not as haphazard as it may seem (I can feel my anxiety rising even typing this!). It’s more than I’ve been making his food for so long now that I think I could do it in my sleep. I can rough measure proteins, fruits & veggies, carbs, dairy substitutes, fats, supplements, etc while making the rest of our dinner, and somehow it turns out okay every time.
He continues to taste foods by mouth, the current favourites being chocolate or mint chocolate ice cream. He eats very little by mouth these days, and we are less and less concerned by this. I think one of the best things we did was stop his occupational and feeding therapy several years ago. He got to just be a kid, and we all got to relax a bit.
While his “swallow” muscles have strengthened over the years, it is physically impossible for him to bite, chew and swallow a sandwich, for example. His swallow is not strong enough to clear his mouth and push the food all the way down to his stomach. The resulting “pooling” that remains in the upper throat area puts him at risk of aspiration (breathing in food/liquid). However as he has had dozens of chest x-rays over the years and has shown no signs of aspiration, he has the go ahead to continue exploring foods by mouth, in a way that makes sense for him. When or if he shows interest in restarting, then we’ll discuss it as a family. Until then, he’s old enough that we follow his lead. It’s now him who’s in the lead, with us and his doctors in the supporting roles.
Henry received his first feeding tube at 2 month of age – a nasal-gastronomy tube (or ng tube). This type does not request surgery, but is highly invasive in that it goes through the nose, down the back of the throat and into the stomach. Just after his 1st birthday, Henry had surgery to receive his g-tube. Almost 12 years later he still has his food button and we are so happy he’s getting the nutrition he needs to be a happy, healthy tween!
Cheers, Shelley
Henry's Homemade Formula 
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