We've been around the block on the whole feeding tube thing, so it's both easier and harder this time around. This time we're being a little more invested in making this as stress-free a situation as possible, because the truth is that like the vent and the trach, we don't know how long we'll be needing this feeding tube.
We've managed to get Leaf transitioned back from all of her feeds being via j-tube (straight into the intestines, bypassing the stomach) to being via g-tube (straight into the stomach). We're not vomit free, mind you, but close enough that we're willing to live with it as-is. I need to contact the vent clinic team to talk about how long we need to go like this before we can have her g-j button switched back to a g-tube button. Personally, I suspect that would help us some anyway, as there will not be a tube from her stomach to her intestine that way, and the button itself will be smaller, and easier to get it good and snug so it's not wobbling in her stomach and causing more vomiting.
For Acorn, we used Button Buddies for a long time - until his tube was the wrong size and started leaking. For Leaf, this week in the mail I got some similar button wraps, and a feeding tube belt from Belly Buttons - these are super soft fleece on the back and cute butterflies on the front, and we're hopeful that Leaf's super sensitive skin will like these better than the gauze we've been using, and that it'll help reduce the amount of granulation tissue we tend to get around her button.
The belt is to help protect the button from getting caught on things, and to help route tubing if you need to leave it connected like we did when we were doing continuous feedings. I really wish these had been available when Acorn was using his only occasionally - we had more accidental tube removals due to him sliding around on his belly than we'd hoped. They're all terribly cute, and the belt is sized to grow with her so we'll probably still be using it when she eventually gets her tube out.
Because we weren't sure how long we would be doing the continuous feed bit, we also got a backpack from Feeding Essentials for Leaf's feeding pump. I really like it, and if we can get her to be even a little less pukey I can see it coming in handy; right now we're limiting feeding in the car to only if we can't avoid it - even without the risk of projectile vomit, trying to bolus from an open syringe in a moving vehicle is the definition of a disaster waiting to happen, so bolus feeds with the pump would be great in the car.
There are a number of people on facebook and on Etsy who make these sorts of things for feeding tubes - got any recommendations for anyone, or other suggestions of bling we ought to investigate?
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