Bet you didn't know there's a Feeding Tube Awareness Week!
We certainly didn't but we're so glad a week exists to raise awareness and celebrate feeding tubes, something that has changed Jack's life for the better.
A little over 6 months ago we were wrestling with the decision to have a gastrostomy tube (G-tube) placed. Jack had been in the hospital for most of July at this point with complications from the keto diet (ketoacidosis), he wasn't eating enough by mouth and our options were:
1. Stay in the hospital until his intake improved
2. Leave with a temporary (and helpful but annoying) nasogastric tube (NG-tube)
3. Have a G-tube placed
So what’s a G-tube?
Let's start with what it's not. G-tubes, or any feeding tubes, are NOT scary or sad, they are incredibly helpful tools that provide a reliable (and easy!) method for feeding, hydration and medication administration.
For Jack, his G-tube serves 2 main purposes:
Consistent hydration
Medication delivery
A G-tube is a medical device used to provide nutrition, fluids and medication directly in to the stomach. The tube was surgically inserted through Jack's abdominal wall while he was under anesthesia last July. G-tubes provide easy access to the stomach to prevent malnutrition, dehydration and promote overall health and well-being.
Additionally, G-tubes minimize the risk of aspiration, a potential complication when swallowing is compromised (as it can be with hypotonia (another symptom of NKH). Aspiration can cause pneumonia which could be devastating for Jack and other kids like him.
In short, the G-tube has been a game-changer.
Jack's hydration has to be monitored daily to prevent complications of the keto diet. Every fluid ounce is tracked diligently, both calories and his overall hydration status. Fortunately, Jack is able to consume solid food and fluids by mouth, so for him the G-tube is used as a back-up for nutrition and hydration on days when his routine is thrown off from other NKH symptoms.
Arguably, the greatest benefit of Jack's G-tube is the ability to easily deliver medication every 6 hours. Gone are the days of watching Jack gag on 7 different meds at 6 PM or having to wake him up at midnight (and being nervous we'd trigger a seizure) to take his gross NKH med! Now, in quite literally 5 minutes, Jack's meds are delivered efficiently, effectively and safely.
Jack's feeding tube has drastically improved his (and our) quality of life. It's a decision we don't regret in the slightest.
If you see us whipping out Jack's tubie, as we affectionately call it, don't be scared to look at it or ask questions. We think it's pretty cool AND bonus (!), it glows in the dark!
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