You may have seen us in the cafe, in the park, or in a restaurant.
No matter the location, the ritual is always the same.
I sanitize my hands, unpack a syringe, prime a 30 cm long tube extension, pushing out any air in it, and then I draw up some liquid into the syringe from a drinking bottle.
Then with one apt movement, that of a ritual repeated bi-hourly each day, I reach under her shirt and attach the extension tube to her button-style feeding tube port.
Not even having to think about the steps, I then flip the top on the extension and insert the tip of the luer lock syringe into the extension.
Slowly, I administer 20 ml of the liquid.
Today the liquid is fennel tea, less boring than water and helpful with digestion.
Depending on the time of day it may be medicine, water, or a serving of specialized enteral feeding formula.
If you have never been exposed to someone with a feeding tube, your first thought might be to turn away in embarrassment.
The ritual, while familiar to me, is very foreign, and perhaps even a bit personal to you.
To me this is how I keep my child hydrated, and at times, this is how I feed my child.
She would have also continued to suffer from devastating lung damage caused by the repeated aspiration of fluids.
Sometimes if you are curious, you may ask me what I am doing, and I am happy to explain.
You may even ask me if we’ll ever be able to get rid of the feeding tube, and I’ll tell you, that we may, but for now it is still a very important part of my daughter’s care and quality of life.
Even though I am very thankful for the feeding tube, it wasn’t an easy decision to move from feeding from a baby bottle at seven months to fully tube feeding, but it was a necessary decision.
Parents of children with feeding tubes never make the decision lightly, often trying everything else first and exhausting all other options in lieu of getting a feeding tube, only to end up at the last resort—the feeding tube—when all alternatives fail.
In our case we started off with a nasogastric tube (NG tube), and after two months of improvement in weight gain and a reduction in aspiration episodes, we made the daunting decision to have a percutaneous endoscopic gastrostomy (PEG) tube surgically placed.
Two years later, as part of another operation, the PEG was exchanged for a G-Button tube, which has the advantage, that it can be changed out at home if defective and is non-obtrusive.
Over the last four years, we have moved away from Mia needing to be fully tube fed.
Only when she is sick, does she need actual meals to be tube fed.
But the tube is omni-present, as it still plays a key role in helping to protect Mia’s lungs from aspiration that happens during the drinking of liquids.
While our story may echo that of many special needs families, there are hundreds of diagnoses that lead to tube feeding necessity.
There are many variations as to how the feeding tube is used to support a child or adult.
If your family is currently facing the decision to move to tube feeding, know that you are not alone.
Often when I am asked if I regret the decision to have the tube placed, I say, the only regret that I have, is that we did not do it sooner.
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