I recently posted a button change video on Instagram and got lots of questions: and I honestly love questions like these. There is so much for people to learn, to help people to see that modifications to life like this are okay and still lets people live good, happy lives.
-Ethan is strictly tube fed. All of his medication, fluid, and food goes through the tube using an extension we connect to the Button.
-the second photo shows how the button looks once it’s placed. The button gets inserted, deflated, through the stoma – the hole the button goes through to get into the stomach – and then the balloon gets filled with the proper amount of water. The AMT MiniOne, which is the button brand we have, had a balloon shaped similar to an apple. This keeps the button nicely secured. The balloon is pliable so if it gets pulled on hard enough it can squeeze it’s way through the stoma, but overall it’s pretty secure.
-we have a G-Tube emergency kit which has a backup button, the supplies needed for a change, as well as catheters in smaller sizes in case the stoma starts to close and we can’t get the button back in. Inserting a catheter a bit smaller keeps the hole from closing more and gives us a chance to stretch it back open big enough to fit his button. Thankfully we haven’t had to do this yet.
-we don’t know how long he will need his feeding tube. We’ve done some feeding trials this summer and he’s not ready to start oral feedings. When he is ready, safe and coordinated enough it will still be quite the transition, but we will deal with that whenever it comes.
-Ethan currently gets fed a Real Food Blend Diet. We blend regular food in our Blentec Blender and he gets 3 meals and 1-2 snacks a day. His diet is much healthier than mine will ever be, I won’t lie. I love that blending it gives us full control of what goes into his little body. It’s a lot more work, but so much better for him. Any other questions? As always, feel free to ask