This is a phrase that is often used in our life. Medical challenges, daily obstacles, and more are not often easily solved. However, we’ve been doing this long enough that we can MacGyver so much more than we originally thought.
LE has Farrell bags now. These hook up to her button and vent air from her tummy 24/7. But you know what? She is also super active. Part of the Farrell bag has to remain below her tummy, and the bag has to remain above. It took us a little bit of time to figure out how to make that happen.
Enter: The modified backpack! We took a backpack that was found at a local Goodwill and made some changes. I added a chest and waist strap along with padded strap covers. I relocated a clip that came in one pocket to the main pocket to hook the bag to. Then we added a grommet to the side so the tubing can run out of the backpack to her button. Top it all off with reusable Velcro straps to keep the tubing coiled and prevent her from tripping over it. Ta-da! LE now has a backpack (that she is willing to wear!) that not only allows her to vent her tummy, but also fits her feeding pump so if she needs extra fluids, we can run those, too.
We improvise a lot here. It lets us get things done without having to wait on other parties to get their act together (like insurance companies!). I also recently got a pattern to make a g tube belt. This belt wraps around her belly and covers the g button, while still allowing me to access it with closeable windows and pockets. LE has discovered that she can twist her tube around at the button and has come really close to disconnecting herself! (She also thinks it is hilarious to open a port while connected so she drains belly juice all over us, but that’s another story).
Life is all above overcoming challenges. Stay positive! It can be done!