Tuesday, February 8, 2011

Day 3 - Feeding Tube Awareness Week

Wow, day 3 already - this week is going bye too fast!!!

Our focus today is addressing misconceptions about feeding tubes.  Until Allie, I didn't know anything about tube feeding and honestly, I didn't even know it was an option for Allie until well into her medical journey.

Topic for today: What do you want people to know about tube feeding?

It's funny - out of all the topics so far, I am struggling with this one.  Honestly, one thing comes to mind quickly but it is not what I would have thought to blog about.

My thoughts go directly to other parents who are struggling with the fact that their child doesn't eat enough orally.  We have been down that road and it's a hard road to travel alone.  One of the most natural things in life is to eat and when your child refuses to the point of starvation, it's scary.  Allie's feeding tube was a last resort, however my personal opinion is that a feeding tube doesn't always have to be a last resort.  For Allie, we waited so long to get her tube, only because we were uneducated about it and didn't know it was an option.  Allie was so malnourished her brain stopped developing and she was loosing abilities she had used just days before.  She got to the point where she didn't make a sound or say anything, she wasn't walking straight and she was continually loosing her balance and falling.  This was the extreme - but it only got this far because we were uneducated about feeding tubes and for some reason the doctors weren't suggesting she get one.

So, for all you parents out there that are struggling with feeding your child orally and your doctor has mentioned a feeding tube, please know that having a child with a feeding tube is okay.  It doesn't mean that your child will be tube fed for the rest of their life.  For many children, having a tubie is temporary until they learn to eat enough to grow and thrive on their own.   Keep in mind there are many medical reasons that children refuse to eat enough to grow and thrive and in many cases (as in ours) figuring that medical reason out can take years. 

If you would like to become more knowledgeable about feeding tubes, please check out the following link: http://www.feedingtubeawareneess.com/  This website offers great information that many of your doctors will not tell you.  The information on this website is provided by a group of parents who have a child with a feeding tube.

I am NOT saying that every child that doesn't eat should get a feeding tube - you have to make sure it's right for you and your child.  You have to make sure you are 100% supportive of the decision - after all, it's a big decision you are making for you child. I just want you to know that a feeding tube isn't a bad or scary thing it actually is a life saver for many little one's.  In our case, I truly believe we waited too long to get Allie her tube and I live with that regret everyday.

I don't want to make light of the feeding tube - it's a serious medical decision and it comes along with many possible complications.  I just want people to be more aware of them and better educated because honestly the doctors don't do a great job with explaining the pros and cons of the feeding tube.  Remember, doctors don't have a vested interested in your child like you do.  I learnt that the hard way!

I will not lie - it's not always easy having a tube fed child. There are down sides to it but when you compare to the alternative........your child not developing properly because or malnourishment or your child is starving to death, the feeding tube isn't a bad thing at all! 

My little Allie is happy and healthy because of her feeding tube!!!!

Without Allie's tube, she wouldn't be able to have those chubby cheeks and such a cute smile!

1 comment:

  1. You're doing a great job with your posts this week - keep it up!