Kaleb has always loved food and dearly misses his bottles. He has finally calmed down so he doesn't become hysterical every time he sees a baby or kid with a bottle. Thank goodness, that was a rough time!
With everything he has gone through he has shown how smart he is. He knows that his formula that used to be in his bottle, is now in his tube that hooks up directly to his stomach. Over the months that he has been g-tube (gastrostomy tube) dependent he has learned different ways to get the formula out of the tube and in to his mouth, which is a no no for Kaleb. He has learned he can open his med port (the hole where you put all medications) and suck out what's in the tube. Also disturbing is when there is no flow into his stomach he can open the tube and suck out stomach contents. Yeah...it's gross.
The past couple of weeks have been especially difficult because he has learned how to detach a part of the tube by biting on it a certain way and there is no cover for this area on the tube. We have tried everything. Tying blankets around the tube, tying wipes around certain parts of the tube, and even went to Lowes and bought cable keeper cords which fit nicely over the medical tubing...but my lovely child has figured out how to even pull that off. I'm at a loss for what to do.
Because of this Kaleb can only be fed by tube when I am right next to him to stop his chewing. Feeding him in the car was awesome but I can't anymore because most of the roads I drive on are highways and it's happened a few times where I have to pull over on the highway with cars zipping past us to I can stop his flow and clean up the mess.
The annoying part of having to be right next to him during all of his feeds is that his feeds take ONE HOUR to finish. His GI doctor wants him to have FOUR feeds a day...that is FOUR hours out of our day. Not to mention I have to keep his hands busy...I'm running out of things to do with him during these hours. What the GI wants really doesn't happen, ever...with the amount of time that has to be in between feeds and the length of the feeds...we just don't have enough time in the day. And don't even get me started on continuous feeds at night...not even going there. He does however get as much nutritious food by mouth that I can safely get him to eat, as possible.
Today I took a chance and tube fed him in the car...really I was desperate because he really needed to eat. So I tried to hide the cords as well as I can and even covered them with the cable covers from Lowes to make it harder for him to chew it...and then I had to pull over.
Pulled the cable covers off, coiled up the tubing....commence chewing.
How much tubing fits in Kaleb's mouth? We are going for a record here.
Sliding the tubing through his teeth...just like floss. Really, really thick floss.
Oh and now we have dance moves with the tubing.
I do believe his tubing is his best friend. Sigh....