I posted about our experience with Luca having a feeding tube. You can read the original post here.
A few people asked some questions. I am all about raising awareness for Urea Cycle Disorders, and everything that comes along with it. As a part of that, I am open to answering questions to make it seem more real, less scary. Along the way, if you have questions, please feel free to ask. So here are the few questions, answered.
- Will Luca ever get the g-tube removed? It is our hope that she will have it removed eventually. However, she will need to be eating/drinking all of her food by mouth and taking all of her meds by mouth for several months before it can be removed.
- How will it effect her long term? People can live their entire lives with g-tubes. People have them for all sorts of reasons. There really isn't anything about having a g-tube that will inhibit her from doing anything. She can bathe, swim, play sports. She may not want to wear a bikini as an adult - but so be it. While we don't want her to have it for long, if she does need it, it will be normal for her to have it because it's all she's ever known. Eventually when and if we can have it removed, it will leave a little round scar (very small in comparison to her massive transplant scar).
- I've seen a g-tube on another child before and it doesn't look like Luca's. What's the difference? We were lucky that the doctor inserting her g-tube was able to go straight to a MIC-KEY button. That is what Luca has - a button. The advantage to this is that we can detach the tubing, and it sits flush against her skin, just like a little button or port. In the picture I posted, the tubing is detached and the button sits nicely against her skin. Normally, people start with a tube that comes straight out from their bellies, and therefore it cannot be detached. Once the skin heals around that tube, they normally can upgrade to a MIC-KEY like Luca. It just depends on the doctor, and the specific case whether they go straight to a MIC-KEY, or start with just a plain old tube.