Feeding Tube Awareness Week 2013
Yesterday kicked off this year’s Feeding Tube Awareness week. As with just about everything in my life right now, I’m about a day behind. But even with all the craziness in our world right now, I really want to participate and spread awareness as much as I can this week.
Yesterday, I was supposed to: Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube.
I basically answered this prompt in a post last year, so if you are interested, here is the link:
There have been some changes with Grayson’s feeding tube since last year. He no longer has a G-tube, but a GJ-tube, which bypasses his stomach and feeds his formula directly into his intestines. If we are able at some point to go back to feeding him in his stomach, the button has a G-port that we would be able to do that. At this point, we do not see that happening any time soon. Since his feeds go directly into his intestines and the intestines do not expand like the stomach does, he cannot do bolus feeds; he has to be fed continuously throughout the day and night. Grayson’s feeding pole and backpack are so much a part of him that I rarely think about it any more, although I have to be really careful not to catch the tubing on anything or pull it when I’m changing his diaper. In fact, I catch myself checking for a tube and being careful of a button when I pick up Charlotte (crazy things our minds do!).
Right now, Grayson eats nothing by mouth. He will occasionally taste a bite of food and even swallow some (although usually he vomits it back up) and we expect his feeding tube to be a permanent thing. I have accepted this and am mostly just grateful because his tube literally keeps him alive!
Today’s prompt: What is your advice for those who are faced with the decision to tube feed or are new to tube feeding? Share your knowledge and experience to help others,
For me, the decision to tube feed was not difficult. Although the prospect of surgery was scary, my child projectile vomiting up what he was taking by mouth (which wasn’t much) and being deemed failure to thrive was a whole lot scarier. There is definitely a learning curve when it comes to learning and being comfortable with the feeding equipment, but like I said above, it quickly becomes second nature and for Grayson, the benefits have been huge.
My biggest advice: ask for advice, and not from your doctor. Get connected with other tubie parents who know tricks and can help you troubleshoot. Like the Feeding Tube Awareness facebook page and don’t be afraid to ask questions. Make as many connections as you can, because you will feel less alone.
I am really going to try and blog the rest of the prompts this week, although I may have to double up some again. And if you have any questions about Grayson and/or tube feeding, please ask!
I like your advice to ask for advice, but not from a doctor! I have a friend whose daughter is tube-fed right now, and I wonder who all she's talked to about this. I may mention this post to her.
There really is a learning curve. Those first days are so hard, but they become second nature really fast. Anytime I pick up any child I think about "their" tubie, then I have to remind myself that most kids don't have tubies. Also the advice to get connected is so true. I was amazed by the statistic that half a million people are tube fed, because I am so connected to the tubie world that number seems a lot higher.
People on feeding tubes can have real food too. http://justfoodblends.com