I am a mom to a wonderful little guy, named Lakai. He was born seventeen weeks early, an suffered many health issues, surgeries and traumas during his 137 day NICU stay. He had heart surgery to close his PDA and there is a risk with this surgery, of paralyzing the vocal. Which happened to our little guy, he failed numerous feeding studies and had gross aspiration on all textures. He was allowed nothing by mouth, till he passed on honey thick shortly before his first bday.
He is four now and still has his gtube, he has not passed a feeding study yet. But has been drinking water by mouth, without any problems. No one knows why.
I am curious if you can tell me exactly what it feels like to have a gtube? When it hurts? Things you think maybe our son cannot tell us yet?