Oh no. Oh yes.

Hello friends. Ava was feeling better until yesterday when she began complaining about her lower right side abdomen hurting again. She went to the nurse's office today at school so of course I went and got her. I called Iowa City and Dr.
Shilansky wanted to have an ultrasound done to see if the fluid was back. We quickly jumped in the car to make the trip. Again Ava keeping me on my toes!

Good news. No fluid!!

Dr. S was uncertain why Ava is still having discomfort. It could be just the healing of where the tube was, he wasn't sure. He did bring up the need to fix her diaphragm. I've been asking my amazing cdh parents from our page. I had asked Dr. S about the pig tissue repair and he told us that was something he had been discussing with other doctors and it could be a possibly if that was something we wanted to try. CHOP does the pig tissue repair as well.

I've been asking God to give us clear indicators of the right choices and today I felt a peace come over me that this visit was a great step in the right direction. The nurse is going to call me in the next day or so and get us set up to see Dr. Shilyansky and Dr. Fisher the plastic surgeon. They will be working together to help repair Ava's left diaphragm. The tenitive plan is to do surgery in April. Yikes. Right? Pray for us. This is such a huge life step in Ava's life and ours too.

Thanks again for all the thoughts, well wishes and prayers. We love when you leave us comments below. It truly blesses our hearts. God bless!

-Terri and Ava

Drain removal

Hello Ava friends. Ava has been hanging in there and being so tough. She is still out of school and missing her friends a lot. Emeline came over last night to help her with homework. Those two sure have a strong bond. Emme is like her second mom. The last 5 days she has had less than 5 ml's a day come out of her drain. We thought the tube was going to come out on Tuesday but they were not able to get her in until today. She was more than ready to have it out. Monday night we noticed blood in her drain line. Ava was really worried and I was too. I called the on call doctor and he thought it was probably just the tube rubbing against her inside causing irritation and blood. Last night there was a lot more so we were really glad to get it taken out today.

We did a dressing change on Tuesday night. She is so sensitive to tape. Her poor skin is raw in a few spots. I decided to use Tegaderm from like 10 years ago. Yes I kept it! As you can see her stitch is hanging on by literally by a thread.

This was the finished dressing change. It was a challenge to tape the tubing so that it didn't get pulled on again. (She's been very careful around doorknobs since the Sunday night Emergency room incident.)

Sorry if this grosses anyone out but I wanted to show the color changes. February 10th was the yellowish color that her fluid had been draining then it got some blood in it.

Total output for the two weeks. Crazy how she had it in a full two weeks.

She had to get an ultrasound today to make sure the cavity of fluid was gone. It was! She was given the all clear to head to radiology to have the drain removed. She is so tall she barely fits on their bed.

Good news! No fluid cavity!

Here is what it looked like right after she pulled the drain. She felt so much better the instant it was gone. We celebrated by getting lunch at the mall.... her pick Chick fil- A.

I thought we had an appointment to see the radiologist to discuss what he thought the free fluid was a result of but he was not available. I really want to figure it out. I'm going to try and get a hold of his office tomorrow. Things were know... the fluid was perinatal fluid. (The fluid your abdomen produces to help encase your organs.) It came back all normal. There was a few lymphatic cell in it but not enough to cause them to worry. At this point it seems the cavity of free fluid that was on her lower right side of her abdomen is gone. The drain did its job as the fluid kept getting less and less. 

Help us continue to pray for her healing and for the fluid to stay away. We are also still monitoring her diaphragm closely. I'm not thinking too much of the future today I'm just celebrating the fact that she is better today. This has all been bringing up the trauma of her medical past. Bad dreams have become part of my sleep. I hope I can now get some rest. I know I can't control things. I have to give them to God. It's so hard to do when your child is looking at a major life changing surgery. Give it to God and live in peace. The reality is... none of us are assured tomorrow. Live today! Thanks for stopping by and checking in on Ava. We sure appreciate all your thoughts, well wishes and prayers.

 -Terri and Ava

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

Free Fluid still unsolved

Good Morning Ava friends! We have had a lot happen in the last few days. I haven't had time to sit down and write it all out. This morning Ava got a half shower. She feels better. She's still in pain but handles it very well.

Let me go back to Friday. We got discharged and left the hospital a little after 3. We were so happy to be heading home! I wheeled her out to the car. This procedure and stay was just Ava and I. 

We got home around 4:30. I got her settled into bed to rest. She began complaining that the tape was really itchy. I called and talked to the on-call doctor he said to take the tape off and put bandaid on top of it. (What?) So I did my own thing. It was so hard to get the paper tape off her skin. She cried a few times. It is written in her chart which tape she is NOT allergic to. (The only tapes that work on Ava is Tegaderm and satin.) I was so disappointed that they didn't listen. I redressed with tape she's not allergic to. I was so glad it was changed.

This was her with the tape dressing they placed at the hospital.

Here is what the tube looked like after I removed the paper tape she is allergic to. I was hoping to avoid a dressing change for about 5-7 days but apparently God had other plans. It was hard to visually see the hole again after so many years. (Her last drain was in 2009.)

Saturday the 1st went pretty well. Ava rested and I could tell that she felt better. We rented a movie and she said that she was feeling better than she had before Thursday. The bloating feeling was gone and if she didn't move she forgot she even had the drain in! I was so happy to hear this.

Sunday was a whopper and I don't mean the sandwich. Ava got her tubing caught on the doorknob and pulled the line out slightly. She was in a lot of pain and then the drain stopped having suction. She was really beating herself up. I called Iowa City and we headed to their Emergency room. From previous dealings with a drain and speaking with an on-call doctor it was "apparent" that the drain had a leak and would have to be removed. Bless Emeline's heart she came with us. Emeline is like a good drug for Ava. She calms her and she always brings a smile to her face. She's her second mom. I tried to be positive. I am 98% happy all the time but anger reared its head and I got upset. I rarely ever get mad. I held onto faith but do admit it was a very hard day, after all, we've been through these last few weeks. 

Here was Ava when they pulled off part of the tape to look to see if the tube had come out.

The ER got Ava right in and after about 5 hours the interventional radiologist found that the bulb connection was leaking and not the tubing that came out of her abdomen. It still worked. They did an ultrasound to make sure there was no build-up of fluid on the inside of her abdomen. There was not. The drain was working. We were all so relieved. The ER staff was amazing. Her nurse was a germ freak like me! Usually, the nurses get aggravated when I wipe things down myself to be sure that it got done. Cheryl was just the opposite. She helped me! Ava had a little tiff with the doctor because she only wants me to dress her tube line and he did a few things with tape that she didn't like. It all turned out alright in the end. We left at about noon Sunday and got home at about 8:30. What a long and hard day. She is such a tough little lady. She was very sassy. I'm not sure where she gets that from! We had to stop and get her ibuprofen for the drive home. They worked her over pretty good.

We are hoping all the drama is gone. I called her school this morning and let them know that she would not be back until mid-February. Her school has not been helping her like they have in the past years. I'm very disappointed in them. I love her school nurse. She was the only one that reached out and was concerned about Ava. No one else did at all. I pray she is able to get her work and things will go smoothly.

We have an appointment with her surgeon and interventional radiologist doctors on Thursday. We hope to find more out about what this fluid is and how we can get it to stop. It is draining about 25 ml's a day so fat. That is too much. They are hoping with the drain in place that the free fluid cavity will disappear and heal. If it keeps putting out the fluid something will need to he done. It did have "some" lymnthatic cells in it. We hope to solve this mystery soon.

Thanks for checking in. We really appreciate the prayers!