Thursday, November 30, 2017

Test Day

Hello everyone. Today was a very long day. Ava had a CT scan and an ultrasound to see how her diaphragm was holding up. She had some symptoms last year and then at the last appointment her x ray looked different to the ones in the past as I explained in the last post. Our goal is to be proactive with her situation... if that is possible. Congenital Diaphragmatic Hernia has been anything but true to itself. It keeps us on our toes to say the least! Ava did so well as always. She downed the contrast for her CT scan like it was water. I've had this stuff and it's not that good. She did have lemon flavoring added to make it taste a little better. She's so amazing!

Here she is in the CT scan. No fear at all. It took a big whopping 1:15 seconds.

She then went to the ultrasound room where a very nice lady and Dr. Kao. He remembered us both so well. He couldn't believe how tall she had gotten. (Everyone says this!!) We wanted to see how her diaphragm moved while she was breathing. I was shocked to find out that her left (patched) left side does not move at all when she takes a breath. The right side performs like a normal diaphragm. The doctor said this is typical for cdh kids. Of the 12 years I've known about CDH I'd never knew this. It goes to show you that we just keep learning about this birth defect at each and every visit.

So next we went and talked to her surgeon Dr, Shilyansky about the tests. He couldn't confirm anything as he is not a radiologist. He wants Dr. Kao to look through the scans and get his opinion. It is very hard to tell what everything is by just going through a CT scan fast... especially when you are looking at things that are in odd places like how Ava's body is. We know that her small bowel is on the right and her large bowel is on the left. Her large bowel goes all the way up to where the diaphragm patch is. Her spleen is laying oddly there as well.

We were able to see Dr. Fisher today. He is a plastic surgeon. I was so happy he was able to get us in on such short notice. We had so many questions about the muscle repair surgery. He was great at answering all of them. So basically if Ava had a large hole again in her diaphragm Dr. Shilyansky would go in and clean up her scar tissue. Then Dr. Fisher would take a side portion of her left muscle in her back and lay it down to form a new diaphragm. It is a very difficult and long surgery. It will be huge! Now if the hole is small they want to put in another patch. I'm hoping we won't need either. Brian and I just want to know our options when it comes to fixing her this time. Last time when she reherniated. (Her diaphragm failed) she was so sick that they just had to go in and save her as fast as possible and that meant using another Gortex patch. Ava has grown so much over the last few years that it's almost unbelievable. I worry the patch will break. And learning today that it also doesn't move with her disturbs me as well.

So we now wait for the official results. It should take a day or so. It's so tough being a parent and having to make such tough choices about your child. Choices that will affect the rest of her life. I do feel that God is with us every step of the way. I try not to ponder to much on the what if's. I think if it's bad we will deal with it on that day. One day at a time! Please keep Ava and our entire family in your prayers.

~Terri Helmick


Bryan said...

I can't believe how grown up she is. Her and Ally were just toddlers when we met online. Now they're beautiful young ladies. Pam Winter

Mary Lou said...

I will definitely keep my Kindred Spirit CDH survivor Ava {and you, Mama} in my prayers!! Thank-you for the update, Friend, I appreciated it!! ;)
Have yourself a merry little Christmas.... Despite the emotional stress that you are currently under.... Isn't that what that Christmas song is all about? ;)
Peace out, Mary Lou {Formally known as Raelyn}