Talk of Diaphragm Repair

Hello everyone. Ava has been hanging in there. Her pain is controlled by Advil liquid gels. She's been taking 4 twice a day. She rates her pain at a 6 when the medicine wears off. 

My wonderful mother made her a cross bag for her tube. It is perfect. How adorable is she? Want to make something happen boom it's a reality! We love and thank you, Mom!

We had an appointment with Dr. Shilyanky today. He is concerned with the latest CT scan that they took of the fluid in her abdomen. We discussed doing a patch repair in the Summer. Her stomach and large intestine are up in her lung area. It's been in the diaphragm area for several years now but it's been progressively getting further up. He is very concerned that if one or the other gets closed off she will be in a life-threatening situation again. It could happen at any time and she knows what symptoms to look out for.... trouble breathing, vomiting, abdominal pain and no bowel movements. I hate to even think about a repair.

We were waiting for her doctor here. We still can smile. Praise God!

He wants to reopen her incision take her intestines and whatever else out, bring things back where they are supposed to be, repair her diaphragm and put her back together again. The hard part is scar tissue. She's had 6 major abdominal surgeries. Last time he went in he said he hopes he never has to do another surgery. He described her insides as "cement-like".  This patch will be bigger because she has grown so much. She was VERY sick last time so surgery was a lot harder. He wants to avoid this by going in strong if possible.

He also talked about the latissimus flat muscle repair. This is when they make an incision in her side, take some of her muscles and flip/sew it to make a diaphragm. There is a few downfalls to this repair. One part of her side muscle is not there. Also, there is a chance that blood supply could be cut off and it would/could fail. However, I've heard many success stories on our Facebook page. (Raising Healthy Congenital Diaphragmatic hernia children). Here is our illustration.

Dr. S is more confident with the Gortex patch repair for Ava. This is how he fixed her at 25 months. I wish there was an easy answer. We did have a consult 2 years ago with Dr. Fisher (plastic surgeon) here in Iowa and he explained the procedure. He and Dr. S would work as a team. I am going to make an appointment to talk to him again. We need to have a good plan in place. It will also depend on what repair they use when they open her up. She may not have many sides or back diaphragm walls to stabilize it. Plus we are talking about Ava. She tends to throw them more than one curveball. 

This fluid issue has to be resolved first. The radiologist doctor was in a procedure so we have to wait until Tuesday to see him. She is still draining so that sounds fair to me. Dr. S says all the tests come back that it's just peritoneal fluid. (Which is normal fluid in your intestines.) For some reason, Ava's fluid has built up and it doesn't reabsorb. So no answers about the fluid. Very disappointed to go there and come back still not knowing the reason.

We are getting about 14-16 ml's of fluid from February 1st to the 5th. Today was lower at 8 and a half so that is good news. The doctor wants it under 5 ml's for two days before removing the drain. I hope we are there by Tuesday. 

Thanks for thinking of us. We love that you check-in. We love your support and prayers. God bless! -Terri and Ava