Tuesday, August 2, 2016

Upper GI Series FAIL

We had an emotional day yesterday. E went in to get an Upper GI Series and dysphagiagram because her CF team thought she might be silently aspirating. I watched a video with her before we went, showing her that all you have to do is drink something and they take pictures of it going down your throat. No big deal! I bribed her with chocolate milk and skittles and whatever she wanted to have for lunch (she couldn't eat anything before the test so I knew she would be really hungry afterwards.)

Well, it was awful. She was totally fine until she tasted the nasty barium and after that she didn't want to do it anymore. She refused to drink anything, refused to lay on the table, and kept saying she wanted to leave. I really thought i could calmly talk her into cooperating but when that didn't work I let the radiology team take over and they strapped her to the table and used a syringe to get something down her throat. Once she started spitting it out, they said the next step would be to stick a tube down her throat. I told them I didn't want to do that because there are way too many other procedures she has to go through and I didn't want to traumatize her with this one. So, we stopped the test.

When we left she asked if she could have her chocolate milk and skittles and I told her no because she didn't listen to us and do what she was supposed to do. 

Then I cried the whole way home.

I hate that she has to go through all of this. I hate that I have to teach her to listen to the doctors and nurses and cooperate for procedures, when all I want to do is scoop her up and hug her and give her all the skittles and chocolate milk in the world. I know she was scared. I would have been too. She never knows what's going to happen when people start messing with her at the hospital. 

Not giving her the reward I promised was the hardest thing.  I couldn't give it to her when she didn't cooperate, because PARENTING!  But I also know that having CF is hard and doing tests like that is scary and sometimes it's just nice if people give you skittles!

There is no parenting manual, much less a CF parenting manual, that tells you how to handle these kinds of things.  We're winging it.  Sometimes we have good days and sometimes we have bad days. Yesterday was hard for both of us.

Monday, August 1, 2016

We Love Summer!

This summer has been wonderful, health wise.  And it's not because we're hiding out inside.  We've done plenty of fun stuff with the kids.  We've taken them to the library, science museum, water parks, swimming pools, the lake, the peach orchard...we've done it all!  And everyone has stayed healthy.  It has been so nice to have a couple of months where we don't have to worry about extra meds and treatments.  And I'm soaking up every second of it because I know when school starts that will all change!
Since most of my posts are about clinic appointments and illnesses, I thought I would share some pictures of Emery just being a kid and enjoying her summer!