Paracentesis with a Drain.

Hello friends, been  well Ava's been struggling with pain and discomfort for a few days. Wednesday she had an ultrasound to see if the fluid was back. She was right it was.

Thursday morning I called the doctor (University of Iowa children's hospital) and they added her on to their schedule. Her doctor did another paracentesis, or an abdominal tap, this is a procedure that removes ascites (build-up of fluid) from her abdomen (belly). The fluid buildup is called ascites. They did the last one last Wednesday the 22nd and pulled out 650 cc's of fluid. Crazy thing was nothing grew on the cultures and it wasn't infected. She only felt relief from the pressure for 2 days. It's been getting very uncomfortable for her. 

They drained the fluid at around 4:40 Thursday. They left a drain in place to see if the fluid stops. If it doesn't they will have to do things to stop it. We stayed the night. I will have to learn how to take care of the site and measure the fluid in the drain. They will test (cell count) of the fluid to see if it is lymnthatic fluid. The doctors are not sure exactly what this could be. It isn't presenting like a usual lymnthatic malformation. Her doctor wants to leave the drain in for about a week to see if it produces a lot of fluid. There are procedures they can do through her drain to help seal off the cavity if it is a lymnthatic problem. He said he had to poke it three times to get in... it's like super elastic.

Ava is always throwing us rare things. I guess she thinks the doctors need to see the unusual medical mysteries. If you follow the blog you will know what I  mean!

I won't let her go to school with this in. It's in a very low area and the drain is huge. (But we will see.) She will have to do her work at home for at least another week.

She is doing so well. She's so strong and wasn't afraid a bit. This time they did have to intubate her and sedate her heavily but she did fine. She was very tired and very confused. She kept asking us why she was in a different room and was it all over. She pulled my hair and said mom you have curls. They are so pretty. Did you curl your hair this morning? And Then she says... what is so sparkly and it's so shiny them she pulled my necklace. I asked her if she remembered why I wore it? Nope! (She of course knows.) I wear it whenever she goes to the doctor, has a procedure or operation. I also added a charm with all three girls is hearts to represent my love for them. I don't believe in Good luck. I believe in God's faith!

We should be getting out sometime today. We slept for about 2 hours then she wanted food so I went to get McDonalds at 3:30 am. She had not eaten in almost 2 days.

Please pray all goes well. We need answers. She can only have Tylenol and Ibuprofen so pray this will help her. We appreciate the prayers. -Terri

Procedure to drain fluid in her Abdomen.

Hello Ava followers. Sorry for not posting an update in a few days. Ava has been very uncomfortable. Saturday she rested most of the day. Sunday morning she had a very strong stabbing pain on her right side that made her bend over. The rest of the day she seemed okay and then about 6:30 we went to the movies as she wanted to do something that would take her mind off her belly pain. We got about 20 minutes into the movie and I turned to see her shirt up and she was holding her right side. Brian and I talked and decided we needed to leave. She seemed to be in a lot more pain. She described it as "sharp" pain. We debated taking her to the ER. Our local hospital was the place we had taken her two days before. We talked about going to Iowa City. Once we were in the car she seemed to get really emotional. I asked her if she wanted to go home and evaluate her to see exactly what we should do. She was pretty adamant about going to the hospital in Iowa City... however Brian and I knew that once we got up there if she wasn't a lot worse they would just send us home. I did call the hospital and talk to the surgeon resident on call. He thought we were doing all the right things and that if she got worse to let them know. I made her lay down and we hooked her up to the pulse ox machine. I took her temp and she was normal. Her vitals were all normal. She took some ibuprofen and began feeling better so we decided to watch her and see how things went. I woke her early in the morning to keep on top of the pain with medicine.

Monday the clinics were closed so we just kept giving her pain medicine. I also began to chart... I  measured her belly, temperature, and medicines. We really wanted to get her seen but there was no way unless we took her to the emergency room. The resident called me back and assured me they would get her in on Tuesday. Ava seemed to be handling the pain pretty well. She was not her normal flying around self but she still smiled and made jokes so I felt fairly confident in our decision to just watch and see.

Tuesday the doctor's office called me a little after 8am and asked if Thursday would work for her to see Dr. Shilyansky. (Her surgeon) I told her we had to come that day. This could not wait. She talked to the surgery team and got us an appointment to see another surgeon. I was so relieved. We drove up and picked Brian up at work on our way. Ava was so happy we both could be with her. We sat and waited for the surgeon she told us we were going to see. Ava was really uncomfortable and was moving around in the chair. The resident doctors came in and asked us a bunch of questions. After over an hour after that, a nurse came in and told us she was so sorry for the delay but that Dr. Shilyansky was just finishing up a meeting near the hospital and he was on his way to see Ava. We were so relieved. He knows Ava's body. He's done about 3 abdominal surgeries on her.

Dr. Shilyansky was happy to see us but was very concerned with what her CT from Friday showed. He was puzzled about what could cause this free fluid to accumulate in her abdomen. I asked how much fluid he thought was in there. He shocked us by saying around 700cc's. That is about 24 ounces. He agreed that we needed to figure out what this was. He didn't think by what he saw on the scan that it was blood or infection more of just a "collection of fluid". He was glad that she didn't have any fevers and that she could still eat, drink and go to the bathroom. He asked us if we wanted to drain it and try to make her more comfortable and figure out what this fluid could possibly be. We all agreed. They described what would be done in the procedure and how Ava would be sedated. We felt good about it.

This morning we went up to the University of Iowa Children's hospital to have the paracentesis procedure done. Ava didn't seem nervous at all. The resident called right before we left and informed me that the plans had changed slightly and that they would just be using light sedation on Ava as the radiologist felt that fully sedating her might not be the best option. I told him I was fine with that but to please hold that information and not to let Ava know so that she wouldn't be scared. She was adamant yesterday that she wanted to be asleep during the entire thing. (Says the little lady that did an entire heart catheterization with just laughing gas!) When we went to check in a nurse came to us and told us that "the plans had changed and that they were not going to do full sedation." I looked at Ava waiting for her to respond. I was a little surprised that it didn't upset her in the slightest. I was not happy that instead of doing the procedure in the Children's they walked us over to the University hospital. I was so anxious that this was the right decision for Ava. It seemed like they were just "working us in". We waited for about an hour and a half and finally, a nurse called her name. She took us back to a nice room. She took Ava's vitals. She said that another nurse would be in shortly. Stephanie was Ava's nurse and she was a sweetheart. She answered our questions and immediately won over me with her kind spirit. I felt a peace that God had changed the plans for reasons I did not understand however I was more than fine with the direction things were going. Ava is so tall she didn't even fit on the bed. (It was an adult bed too!) 

She looks a little scared in this picture but I can assure you she was doing just fine. I was so proud of her. 

Yes, I had to get our pictures with Ava!

The resident doctor came in and explained the procedure. He told us that they would be removing some and if it looked infected that they would test it. If it showed infection they would drain as much as they could and leave a drain in Ava. If it did not look infected they would extract as much of the fluid and then send it off for testing. Ava seemed good. I signed the papers and a few minutes later I was saying a little prayer and kissing her on her forehead telling her I loved her. I can't believe she is thirteen! These halls we had been to before for major testing when she was 2 and 3. Who could have imagined she would be doing this test?

Brian and I went to the waiting room. I couldn't sit still for long and began pacing back and forth saying a prayer in my mind. She was in good hands. God was with her and that everything was going to be okay. It took an hour and fifteen minutes. I was so happy to see her. We laughed so many times as she was so loopy. The nurse asked her how she felt before we came in and she said, "I feel like my mom when she flies on an airplane." She is a character. (And yes I have to have anxiety meds to fly.) We taped some things she said... she sure LOVED the graham crackers. I think she had 5 packages. Oh and the Coca-Cola. Brian got Emeline on a video call and Ava was so funny and happy to see her sister.

The doctor came in and told us he thought it was lymphatic fluid. They extracted 650 cc's of fluid and that it did not look infected to him. He told us she did extremely well during the procedure. We thanked him and can't wait for answers.

Yes, I took a picture of the fluid... because well you want to see it too right?

She was so goofy for a few hours. She was starving so after waiting for about 45 minutes they discharged us. She requested Olive Garden... soup, salad, and breadsticks. She said her abdomen still hurt. I thought she would feel less pressure but she said it still felt not right.

We got home at about 5pm. Ava was very tired but couldn't seem to settle down. She complained that the incision (tiny it didn't even need a stitch to close it) hurt. I gave her more pain meds but she insisted she still hurt. Finally, about an hour ago she fell asleep. Please pray she will heal well and that we will get answers to why this fluid was there. We are thanking God tonight that it all went so smoothly. Thanks for checking in on Ava. She was sad the other day because no one (especially her friends) had asked how she was doing. I reminded her that people are sometimes afraid to talk about situations like this. It's not that they don't care they just don't know what to say. God bless. -Terri

Free Fluid in Abdomen

Hello friends. Ava got her ultrasound yesterday. Our local hospital told us that Ava had a "pocket of fluid" by her bladder. I called University of Iowa Children's hospital this morning as soon as they opened. The GI doctor (Dr. Lee) called me right back. She suggested I take Ava to our local ER and get a CT scan. So we went out and were so glad to find there wasn't a wait. She was really worried as her right side and her lower back was aching.

This was yesterday at our local hospital.

 This is from today... Ava was not happy to learn she had to get an IV in order to do the IV contrast. Poor little lady was so worried. Bless her heart. The first nurse made two attempts at an IV and then she brought another lady in that got it on her first try. Thank you, Lord!

Ava getting ready to go into the CT machine. I told her that after they injected the die into her IV she would have the taste of metal in her mouth, then have a very warm and comfortable feeling come over her, and next she would feel like she had to go pee. Yes all of that happened to her. I know this machine all too well due to kidney stones.

Waiting for results.

So we learned that Ava has a lot of free fluid in her abdomen on her right side. The picture below is the fluid. It is not encased in anything it is just in there beside her small intestines. No wonder she is bloated. The ER doctor consulted her University of Iowa surgeon and they both thought that since she didn't have a fever, she was just uncomfortable but not in extreme pain that it wasn't an emergency, we could have her surgeon look at her this coming week to determine the cause. They discharged us with instructions... I was very nervous leaving. However we were in the midst of a really bad snow storm so I knew it was not possible to do anything else and I remembered from her NICU/PICU days the nurses always said. "Look at Ava not the monitors. This tells us how she is really doing." They were right. I circled the free fluid below. It is A LOT. Please keep Ava in your prayers. 

As soon as we got home. I called the University and talked to the on call resident. He review the notes that the ER doctor and the on call surgeon discussed. He reassured me that there really is nothing to be done right this second. If Ava gets worse to bring her back to the emergency room but until they can get her in next week he thought she should be fine. Free fluid is not uncommon but this much is not good. Ava's surgeon will discuss what we are going to do from here. This worries me of course but I believe that God has Ava and He will let us know if she needs immediate attention. 

Please pray for her and that whatever this will either disappear or that the solution is simple. I'm just really unsure of how it came to be here. Her blood work all came back normal and they say it is not infection and the fluid is not blood. She's already been through so much. She's now at the age where she is able to listen to her body. I'm very thankful for that. We will just be patient and know that God knows our tomorrow.  -Terri

Cold and abdominal pain

Hello friends! Please send prayers for Ava. She's been battling a very bad cold. We spent all day yesterday at the University of Iowa. When she woke yesterday morning she began having pain in her abdomen on the right side. (Opposite side of her diaphragmatic hernia.) Plus more stabbing pain in her pectus. I knew we had to get answers. The Pulmonary doctor did an x ray. Her lungs look great. She sounds clear. It is a bad viral cold that antibiotics won't help. We then saw her ortho doctor who did a full body xray and we learned that her scoliosis curve has remained stable over the last 6 months. (HUGE Great news there.) She says when Ava coughs her pectus is drawn so far in that it is irritating her because of cartilage and her ribs rubbing. She thinks it will go away when her cold is gone. Next we saw GI. She said was puzzled by Ava's lower right abdominal pain. They want her to stay on Miralax to keep her bowels more regulated. Ava doesn't have an appendix so we knew it couldn't be that. She is not only sore on the front right side but the back as well making them think there may be something going on with her kidney. She is such a strong young lady. I just hope she feels better soon. It's exhausting for her and I.

Her breathing treatments...

We are waiting to go into the doctor... mask on!

She's still smiling so that's great!

X ray of her lungs. No pneumonia... more great news!

Chest x ray clear but her repair side on the left does not look good to me. The doctors, Brian and I suspect her left repair may be coming apart at the side wall. There is no conformation of this but just something we are watching and keeping an eye on. The radiologist said that her repair area is "unchanged" from last time.

Side view of her diaphragm defect.

The left side was taken yesterday and the right side was taken 6 months ago. Ortho is THRILLED that her curve has remained stable. News that made Ava cry. She was worried it was getting worse. This was the best news all day.

Please continue to pray for Ava. She will get an ultrasound hopefully sometime today to rule out a problem with her kidneys. She is still in abdominal pain this morning but not as severe as yesterday. God bless you all for taking the time out of your day to stop by. think about Ava and pray. We sure appreciate your love! _Terri