Tuesday, December 18, 2012

Our Story Continues...Foley to Button

It's been about 8 weeks since Hailey had her G-tube placed. When I was in my class to learn to care for a child with a g-tube they did not tell me that she would have to have this tube hanging out of her for 8 weeks. Everything I used in the simulation class was based on the "button." The button is placed 8 weeks after surgery and it's a low profile "button" that you attach the feeding tube to at the time of the feedings then un-attach. 

The tube she has now is very cumbersome. It is pretty long and causes me great axiety. I am always afraid it's going to snag or get caught on something, not close all the way, get clogged...etc. We have had a handful of times when the adapter from the feed bag has un hooked it's self and there was stomach contents and formula everywhere. The button is suppose to make things easier...we'll see.
Hailey is scheduled to have the button on Thursday. It's not anything she will need to be sedated for, but I know she'll cry, she'll scream, and she'll fight. Last time the Dr. messed with her tube to measure it she fought and kicked and bled all over the place. I have seen way to much of my own child's blood.
Another thing causing me great angst is that the end of the year is coming up and our deductible starts over. We have applied for disability through social security for Hailey which we had been denied and we also applied for Katie Beckett that we have not heard word on. Our insurance will not cover Hailey's formula at 100%. Apparently that's not a medical necessity either? 

I looked up the price of her formula and it's not pretty:


This is for a case of 24 cans. Hailey uses 6 cans a day. One case at 24 cans is $200 and will last us 4 days! $200 every 4 days! Now I'm not a math whiz by any means, but this is going to cost a small fortune.

If I didn't have high blood pressure before, I will or I do now. Maybe Josh more then me. I am doing research on getting this at a lower cost, but this is one of those supply and demand things. I think they sell this on Amazon also, but they can charge you what they want, you need it. What are you going to do? Can't go without...

So first I will worry about Thursdays appointment then I will go back to worrying about this.

To be continued.