I feel like I should be enrolled in medical school and advanced to junior or senior year. Things are getting beyond ridiculous! Something called a 'Farrell Valve' has been sent to us to help with Andi's g-tube. It's "gastric pressure relief system'. So, perhaps it will help with some of the leakage? However, reviewing the pamphlet on how to use, my eyes glaze over and I feel like I should either have my short white coat or nurses wings.
In all my copious free time, I've googled a bit of keywords about how to get infants off a g-tube. Many threads I glimpsed at said their kiddo was 2 or 3 and still had their g-tube. Our OT, whom has the best birth date of the year, said she didn't think it'd take Andi THAT long, but suggested I be patient. I keep wondering how we are to get her off it, when the tube is doing the work to keep her from experiencing real hunger. Our audiologist told me of a woman she works with whom also had enough of the g-tube on her child, and ended up raising $25,000. to take her son to some Austria feeding clinic to to help get it done quicker. I have her e-mail addy and plan to write her to discuss any pearls of wisdom she's able to share, but from what I read online, they basically make the kid eat by mouth, else, they don't eat. Again, I'm not planning on going there, but, according to the dietitian, Andi is only taking about 1/4 of the volume of food needed by mouth, currently, until we can deactivate and remove the g-tube.
I'm planning to give readers a video view of what a g-tube is like, how it works and you can see what her broken down skin looks like... perhaps you can watch her cry when I touch it too. It's heartbreaking and we're all done with it. Of course, today, I've been too busy to force food by mouth, and she's been sleeping through her last two feeds. Ugh.
I just took a photo of her sleeping on her activity mat on the bed. She is cuddling with "froggy" - her pacifier toy. Some of her hair is really long, but some of it has also broken off. Her scalp is chronically dry despite mayo or olive oil treatments. Can't find time to do that every day!!!