Saturday, November 4, 2017

Ava sees her Surgeon Dr. Shilyansky.

Hello Ava followers and friends! Ava had her yearly check up with her surgeon Dr. Shilyansky on Thursday. It was in a brand new building but still part of the hospital. We were a little confused where to go. A few people had to guide us along the way. Once we found the office they told us she had to go get an x ray so again we were wondering around trying to find it. Ava and I always seem to get turned around! BUT at last we found it. She's a pro at x rays. I can't even tell you how many she's had over her life, hundreds I'm sure!

We adore Dr. Shilyansky! Nine years ago when we met him it was due to Ava re herniating. (Her diaphragm failing.) She had flew in a helicopter and was in dire need of help. She was hanging onto life. It was one of the worst days of my life. She was 25 months old. So of course, every time we see him our hearts are just so thankful to him and his team. God did big miracles for her! He used to be a bit larger. He's gotten healthy and has taken up running like me. I had to get a picture of her and him together.

Ava is always a clown. She bounces off the walls waiting for the doctors to come in the room!

A doctor's appointment is always fun with me! Or at least that's what I think! Her dad was with Emeline at the Dentistry clinic there in Iowa City. It was a full day for sure!

Dr. Shilyansky came in and said, "She's not a baby anymore!" No she certainly isn't. They took her weight and height. She weighs 68 and she is just a touch under 5"2. (My height!) He was happy she was feeling great and looking so good and strong. He asked her how old she was... he couldn't believe she was 11! She told him that that she was in choir and that she did a few plays this Summer.

He then turned to her x ray. When he pulled it up I was a little taken back. He said that he doesn't know for sure what is in her left diaphragm area. There is some space which "could" indicate a possible hole or what looks to be bowel in her lung area. He did not say this... I can see this. He said that he is "concerned" about her left diaphragm and wants us to return in three months for another x ray. He will then access how it is and a CT scan would tell us a little more on what was actually happening. My heart fell. This was the first time since Ava has been able to understand and is old enough to see that her body is fragile... so to speak. Brian and I always fear the possibility of more issues or complications. It's just part of our thinking. She was born with a severe birth defect and no left side diaphragm. It's never been easy. Praise God He has helped her and all of us overcome so much so far. Dr. Shilyansky told us that she was older and stronger and if she needed surgery it would be more doable this time around. "Ha ha.. is that even possible?" Here is her x rays from last year and Thursdays. They look similar but it doesn't look good. We don't want another hole. A hole allows bowel to become obstructed and possibly her breathing to be compromised. It's a scary thing.

My wheels are turning fast as we drove home. Brian and I didn't discuss much as I knew it was a conversation to be had in secret, away from Ava. I don't want her to worry or be scared. I can't imagine her angle in all of this. She doesn't remember any of her surgeries or hospital stays that occurred when she was born and then up unto age 4. Brian and I remember them too clearly. 

Here is what my brain is thinking. We need to watch her closely. If she complains of stomach pain, has issues with passing stool or has trouble breathing this will alert us to the possibility that her diaphragm is in trouble. I'm having her chart her bowel movements. (Yep serious mom in overdrive here keeping her baby safe!) If she gets through the 3 months without issue we will get that x ray and if she needs the CT scan done we will get answers. "If" she needs surgery we want her to have the Latissimus dorsi muscle repair surgery. This is when they take would take the muscle from her side or back and use it as her diaphragm. This would be her own issue allowing it to grow and stretch with Ava. The Gortex patch does NOT grow with the person. It is made out of mesh. It usually produces scar tissue around it but in my mind is not stable and reliable. I don't want her to keep having repair surgeries. So my mission is to research and find out where we should go. We don't want to wait for an emergency to get this fixed if there truly is a hole again.

Here is a poster I made to explain the LATT procedure as described above.

I've found some x rays so you can see the progression of her x rays. Some I've used as teaching devises on my page so that is why there is information on them. If I have any CDH parents on here that have any advise please email me at Any thoughts or words we would appreciate.

This is Ava's x ray at birth. Her stomach is right next to her heart and her organs are in her left chest area. I have it all marked.

Here is when she was 6. You can see her left diaphragm is really low.

Here she is at age 7. And again her diaphragm is still pretty low on the left side.

Now I will show you the last two years again. It becomes more scary. Things have moved up. I will go back through my x rays and find more and fill in these years but this is all of them I had on this computer right now.

So please if you would say prayers for Ava and our family. I will not let fear scare me or worry me. I will do just as I have before and do my research and prepare ourselves for what may lie ahead. I'm praying that nothing more happens. I can't be alarmed until God brings me to that place.

I'll leave you with a quote from a great pastor.
Your mind needs a break. It wasn’t meant to “go” all the time. The Scripture says in 1 Peter 5:7, “Cast all your care on Him.” You have to turn your cares over to God. You weren’t designed to carry that load. It’s going to frustrate you. Here’s the key: when you rest, God goes to work. ~Joel Osteen

God Bless each and every one of you!

~Terri Helmick

1 comment:

Sandy Daron said...

Oh gosh!! I am sorry you have this concern. I am thankful that Ava is healthy and thriving and in a good place if she needs surgery.

Love ya,

Love ya,
C.O.L.E.s Foundation (Caring Openly, Loving Eternally)
Sandy Daron