Well, THAT was shortlived. We've been sick these past few days, so again, we're confined indoors. However, we've made some changes in regard to Andi's leaky g-tube. I found a website the other day about this feeding clinic in Austria I'd heard about through our audiologist. She has a patients Mom who was also done with the g-tube, and raised money to take her family to this clinic to work with her son. I found the website and they have online "netcoaching" available. That's something for us to consider down the road if we can't manage to get her feeding on our own. So, I shared this link with our pediatrician, to further discuss at our appointment scheduled the next day. To make a long story short, the problem doesn't seem to be functionality with the device, but it would seem that her stomach is not clearing the food quickly enough. As the more food we put down, the more she leaks. Therefore, we're trying a new medicine, Reglan. It helps push the food from her stomach into her small intestine quicker. [sidenote: I really should have a white medical coat.] The medicine takes about a week to really tell if it's working or not. We started it Tuesday night, so, we shall see. It seems to me that as of this morning, she doesn't seem to be leaking as much, but, we're also sick and not moving around much. In addition to this new dope, her pediatrician has referred us to a GI Pediatrician at the hospital for "a fresh look." He'd mentioned in conversation with Andi's Dad something about some kids whom have had heart surgery, sometimes have nerve damage in their stomach. Although another aspect of CHARGE Syndrome though, can be digestion issues. So, we'll see what we can figure, and hopefully this medicine will help fix the problem. It would seem that if it does work, perhaps the Bean will finally start packing on some pounds, as she won't be losing so much in leakage. And hey, if she could stop leaking the stomach acid that burns her skin, she'd probably hardly ever cry. Lastly, the discussion has been started that down the road we might try to not feed her for 24-48 hours and then try to feed her. Although, I think I think this place in Austria offers more support than just 'make her hungry and then feed.' Will have to come to a decision down the road about participating in that and taking on that expense. However, in the meantime, I've reached out to the local Mom who took her son there, and hope to get more information from her. We'll see how it works out, but we're all in agreement that the tube needs to be phased out, quickly.
For those that want to checkout the feeding clinic and their services:
Interesting read when you know our Bean, and the trials and tribulations of her g-tube.