Why does Tatyanna have a feeding tube?
As Batten Disease progresses it affects the body’s ability to chew, swallow and digest food. Children often often problems aspirating liquids into their lungs or choking. Although Tatyanna never had problems with either, she simply quit eating. We wonder if this was out of a sense of self-preservation.
How old was Tatyanna when she got her g-tube?
Just before her 8th birthday.
Were there ever any complications?
Nothing major. In the beginning she did have some granular tissue build up around the site but it has been fairly smooth sailing for the last two years. Although the rate at which she tolerates feeds has slowed, we’ve been fairly lucky in that Tatyanna has not had issues with things like vomiting or reflux.
How long was the adjustment period following the surgery?
Truthfully, the emotional preparation before the surgery was the hardest part. The difference in Tatyanna after we began tube feeds was huge and left us wishing that we had the operation done sooner.
Was not doing the surgery ever an option?
In Canada, tube feeds are an extra and a parent could “opt out”. But for us this was never an option. I have no doubts that we would have lost our daughter within months had we not gone through with the surgery. Despite the terminal nature of Batten Disease, it was obvious that she still had plenty of life left to live, having a g-tube put in only served to increase the quality of her life. We’ve had three fairly awesome years filled with fun times and plenty of laughter during which she has been completely dependent on a gtube for nutrition. It was the right decision for us.
What do you do when you go out or travel?
We haven’t let tube feeding stop us from going places or doing things. We just pack a bag of supplies, some hand sanitizer and off we go.
What does Tatyanna eat?
At the moment Tatyanna uses a formula called Compleat. Out of all the formulas we have tried (Nutren Jr, Jevity) we found that she has done the best on Compleat. As a mom I like it because it contains real ingredients like chicken, peas, beans and fruit…for some reason that just makes me feel better.
Does she eat anything by mouth at all?
No, nothing….really.
To this day, she does still enjoy the occasional lollipop. 🙂
Were there ever any issues with Tatyanna not being able to eat while everyone else was?
Because we didn’t have issues with aspiration we always had the option of offering her food when we were eating. Despite our efforts, she would refuse every time.
Where do you get your supplies?
In our province all supplies and formula are covered by Manitoba Home Nutrition as well as Home Care. We have a standing order that gets delivered monthly for formula and other supplies are ordered as needed.
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Please feel free to ask if you have any more questions!