The following information comes from the website http://www.feedingtubeawareness.com/. This is a wonderful website that provides endless information about children with feeding tubes. The information on the site is all provided by parents of tube fed children - it's real and not something out of a text book. This is by far my favorite site! There is a section on the site called "family" - here is some of what you will find there...........I know it's long but it's worth reading!
Dear Friends and Family,
We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do.
Moreover, children with feeding tubes often have them because of having complex medical issues. The irony, is that many tubie kids do not look sick. Check out the bios of our tubie kids! However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy.
Here are some things we would like you to know:
If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans.