I subscribe to a lot of special needs social communications.  It’s come to my attention that this week is National Feeding Tube Awareness week. As I read some of the information that’s coming out about the week it really made me realize I take Grace’s feeding tube for granted.

Grace has had a feeding tube since 8 months of age.  It all started because the steroid we had to put her on to fight the seizures caused her insides a whole lot of hurt, and it became painful for her to eat…so she didn’t.  In the hospital they put a tube through her nose down to her stomach.  They taped it to the outside of her face.  It was ugly.  I couldn’t keep it clean.  It was messing with her little face.  I was always afraid she would pull it out.  The nurse who put it in told me that if she did I just needed to double check after reinserting it that I actually got in her stomach…not her lungs.  This was not comforting.  I couldn’t believe they would expect me to perform this procedure – and I didn’t.  Grace did pull it out once and I called the nursing service to put it back in.  It was supposed to be temporary, but it ended up being in for 9 weeks.  Too long.  So we got a g-tube, we call it Grace’s “button”.  With the button in place food is delivered directly to her stomach – no chewing, no swallowing, no work on her part.

This was done in Minnesota.  After the appropriate healing time we took her to the GI doctor here in Des Moines who looked at it, mumbled something about “googling” how to replace the post op version with the regular version and walked out of the room.  Kevin and I about picked her up and just left.  He was going to google how to take care of the device we were using to feed and medicate her??  Uh…no…

He did come to this conclusion himself, so we left, and he contacted the surgeon.  When we went back a week later he took care of it with the confidence we were expecting.

I experienced a lot of emotional turmoil about Grace having a g-tube.  It felt like we were giving up on her.  Somehow allowing her to be more handicapped.  I wrote a blog about it.  A man from our church forwarded my blog entry to someone he knew who had a child with a g-tube.  The woman wrote me a note on the blog.  She completely validated my feelings – but also pointed out so lovingly- that this was not giving up – this was taking care of.  This was a means for Grace to become strong.  It was one of the nicest things a stranger has ever done.

Grace’s button is held inside her by a small balloon filled with a small amount of water.  It’s remarkable really.  If the button isn’t in place the inside of her body is open to the elements.  It’s a hole your not supposed to have.  We’ve been told that if Grace’s button ever comes out and isn’t replaced within an hour, surgical intervention would be necessary to put it back in.  We came close to that once – not fun or something I ever want her to have to go through again.

We replace it every so often when it starts leaking or gets too loose.  I actually perform this replacement sometimes.  I never thought I could do something like that…but I do.

To feed her you attach a tube to the button and then a syringe to the tube.  You pour her formula into the syringe and let gravity do its work!   There have been times when she’s had to use a pump so that we could get the food to her more slowly.  My very clever husband found ways to hook up the pump to run when we were in the car on the way to Minnesota and we cut holes in all the legs of her pajamas so we could run the tubing to the pump up her leg instead of having to worry about her pulling on the tube in her sleep. The formula could only be out of the fridge for four hours so we’d wake up in the night to the beeping pump either telling us the feeding was complete or that we needed to add more formula.   We don’t miss the interruption to our sleep.

It’s not just food the tube provides.  There’s medicine too.  The advantage of the tube is that she always gets her medicine.  Grace can’t tell us no.  She doesn’t have to wake up if she’s sleeping.  We just deliver medicine directly to her stomach at the appropriate times.

I sometimes chuckle because when people meet her for the first time they think that the seizures are something they understand (because they know someone who had seizures and can relate is my theory) but when they see she’ s tube fed that somehow makes her more difficult.  For me it’s the seizures that keep me up at night and cause me the most fear.  The tube is how I feed her.  The tube is how I keep her strong – so she can walk, dance, ride horses, swing, play baseball, learn.  The tube is how is how I keep as many seizures as I can at bay by giving her medicine.  It not something to be overlooked or taken for granted.

Happy National Feeding Tube Awareness Week!