GTube

So our next step in Kadyn's adventure is a feeding tube. Kadyn will have a feeding tube placed as we think he can no longer feed himself enough to keep him hydrated and keep him from losing weight. We will be doing this out patient. His pediatrician is going to get him into IR in about two weeks to start the couple tests that they want him to have before hand. Then hopefully by September we will have his GTUBE. This was a hard decision but one that NEEDED to be done for Kadyn's well being. We can no longer fight his dehydration issues and a Gtube will allow me to put fluids into him, food, medication, anything of that sorts. The good thing is he can still eat, and whatever he does not eat I'll just put into his tube and that way I KNOW for sure he got his nutrients he needs. Although this is a step back, this maybe the step back we need to take in order to go forward. Kadyn's been lacking in going forward for a while now. He was sitting up, and doing many things, but lately I feel as if these things he was doing are no longer there. The skill was taken away from him some how. He also is not as talkative. He still makes noises but getting him to say Dada or MA anymore is a struggle. Although the other day he made it clear to say No No No No. I think once I can get food in his little body, and make him stronger I will see these things again. Kadyn is quite small for a 5 year old. Still wearing 2t clothing and weighing in at only 30lbs.

Thankfully Kadyn's shunt is still working. The thinking is he was so badly dehydrated that he had a severe migraine from it. I don't think I could handle another day/night of Kadyn screaming out of control over his lack of fluid intake anymore. I need a for sure way of knowing Kadyn will get fluids no matter what. I need to know that Kadyn is getting all he needs, and let the stress of worrying about how much Kadyn takes by mouth anymore. Kadyn has had a wonderful journey in eating. He did so well for so long. Eventually we knew this day would come when Kadyn would no longer be able to provide for himself. As Kadyn is mainly bottle fed and not spoon fed (yet still working on it) I don't think Kadyn looks at his bottle as a source of "feeling full" but more so as a source of comfort and something he just enjoys doing.