Dealing with the Drain.

 Hello friends! Ava is continuing to do well. I took this rare picture of her close to her dad. The love is so strong. We often take our health for granted. We shouldn't do this.. I wish Ava didn't have to know this kind of pain and hurt in life. It doesn't seem fair.

We changed her dressing yesterday after her shower. This is how it looked.

Then after I redressed it. These beautiful scars are signs of her courage and strength. 

Here it is tonight. I asked her what it felt like to have a tube like this in your side? She says it feels like someone is constantly poking you. The pressure is always there and you never forget it's there. There is one stitch holding it in place.

It looks good with no redness. There is a little bit of leaking around the site. The output is less and less each day. The color is slightly lighter each day as well.

 Yes I've been holding onto the syringes to show the quantity and color. Is that weird?

 

We found her soft bags my mom made her last time. These have been so perfect. How cute is she draining her own bag? She's doing so well, once again adjusting to all of this.

Thanks again for dropping by to check on Ava. We greatly appreciate your live, support and prayers, everyone!

-Terri and Ava

We are Home!

 Hello friends! Ava rested very well today. She was exhausted from her sickness and procedure so we let her sleep. Can you tell she loves Stitch? My baby isn't so little anymore.

The doctor and residents rounded at about 6:15 am. We had all gotten up at around 5 am. It's so hard for me to sleep in the hospital. The doctor didn't have any new information just that it was not an infection and if we felt good about taking care of her at home we could. I was not going to leave without Ava being able to go #2. They agreed.

We don't have any concrete findings on why fluid built up so heavily in her abdomen yet but Ava checked all the boxes so she was able to get discharged. 

☆ No fever and No infection.

☆ Pain was much better.

☆ She was able to eat.

☆ She could poop. (Sorry Ava.)

☆ The output was lower from the drain.

☆ I know how to take care of her and the tubing at home. Wa-la!

☆ Ava said she was ready to leave. I've got to trust She knows her body.

So it feels so good to be home. We will keep track of the output of the drain. When it is less than 5 ml's a day for 2 days in a row we can call and the radiologists will do an ultrasound and see if it will be ready to come out. We have an appointment for the drain removal and to see her surgeon on November 12. I'm praying she behaves and doesn't give us anything more. Ava likes to do this to all of us. I measured the output at 7 pm. I apologize if it's too graphic but this blog keeps my memory doing well! The color is a little darker and as you can see it's 10 ml's. I think the nurse pulled 5 or 7 ml's this morning. So not terribly bad but still not what we need or want.

I'm so ready for bed. Thanks again for all your support, love and prayers. Ww greatly appreciate them.

-Terri and Ava

Paracentesis procedure

 Hello friends!! Ava has a long day. They came and got her around 8:30 am. We rode in the huge service elevator. It's so big. I was glad to finally get a picture of it.

The staff here is amazing. Olivia was Ava's daytime nurse. Kelly was our nurse that got Ava ready for the fluid drain. We met with the anesthesiologists and radiologist doctors. Everyone was so informative and helpful. We felt she was in great hands.

I was so thankful to have my handsome man by my side. Team Ava is on!! It's always hard to kiss her and tell her she will do just fine. It never gets any easier.

And off she goes! She is so tall she barely fits in the bed. Off she goes... she doesn't even look back.

They started around 9 am. This explains the procedure...

☆ A paracentesis, or an abdominal tap, is a procedure that removes ascites (build-up of fluid) from your abdomen (belly). The fluid buildup can be painful.

It took about an hour and a half. She was in recovery for about an hour. They updated us through text each time something new happened. It went well. The doctor placed a drained the fluid, all 1,200 ml's. He then placed a drain and will be monitoring the output. They did have to sedate her and put her on the ventilator. She came off it well. She was in good spirits going in. They joked were they going to have to surgically remove her phone from her hand. She's so vocal and funny. 

They finally brought her back to her room around 11:18 am. We were so happy to see her. She was sassy and didn't want any help. We left her be and then she slept for a good 4 hours. 

When she woke she was ready to eat. She still has pain... added throat pain from the ventilator as well but is doing better than we expected. We are waiting the results of the tests. The drain tube is on the right side. This is near the same spot as last year. The fluid was darker than I expected. I double checked with her to make sure she was okay with me posting this picture. She said it was fine. It broke my heart to learn she does not want to go back to school until the drain is out due to people making fun of her. We discussed how it could be concealed but she is not interested. Whatever Ava wants we will do. So here it is..

We were able to get a Olive Garden for Supper. We encouraged her to go for a rode in the wheel chair. Her and Brian had fun. I couldn't keep up. 

We had a good night but are now very tired. Ava is facetiming a few of her friends. I'm exhausted as I'm not a hospital sleeper. Thanks again for the thoughts and prayers. The outpouring of love and support we got yesterday was so heart felt. God bless you all friends.

-Terri and Brian

No, Please Lord not again.

 Hello Ava friends and followers. You must forgive me for taking such a long break from blogging. Ava has been so healthy and myself not so much... migraines have taken over. As you can see by the title Ava has caught us off guard, yet again. In January and February of 2020 she went through many days of pain due to fluid collecting in her right abdomen. It was drained by needle then a few days later she had to have a drain placed as the fluid was coming back as fast as it was draining.

So onto my point... last night around 8:30 pm she texted me to come into her room. She was in tears and obviously I could tell she was in pain. She told me her left lower abdomen hurt as though someone was stabbing her. I took a deep breath and motioned Brian to come quickly. My first reaction was to bring her to the University. This little lady needed help and fast. We got on the road fast and was there by 10:00 pm. It took a long time in the Emergency Room but after an xray and bloodwork she was seen by surgery. (I called them during our hour and 20 minute drive to prepare them for her condition. 

Her blood work came back normal and her xray showed she could be constipated. 

She wasn't a happy girl with the enema they recommended. She ended up getting sick and throwing up. Poor Ava. Her history is quite extensive if you aren't familiar with her journey so they admitted her for observation due to her surgical past and stabbing pain that got worse as she walked. So at 2 am we finally made it to the Surgery floor suite. The staff has been amazing. Ava is always cooperative and was not upset when they told her the first IV was no longer. Yes she just gave them her hand and waited patiently. Ava is not an easy vein finder. However she got it on the first try. Thank you Lord.

Can you tell she loves me? ❤ We all tried to get some rest but it was about 3:30 am before we were settled. The surgical team knocked bright and early at 6am. They had called Dr. Shilyansky and he wanted a few more x-rays including a side view. I was so grateful to know he was being briefed our our beautiful but very sick daughter. At around 8am they took her for xrays. She was so tired but she didn't hesitate to jump in the wheel chair. Her phone was her comfort for the next few hours. Brian was trying to rest.

The surgery team also said Shilyansky wanted a CT scan of her abdomen as well. He wanted all eyes on board. This is one of the many reasons we love him. I was able to get a picture of her before her scan.

I was not ready for the results of the scan. I don't think Brian and Ava were either. The surgical nurse practitioner told and showed us Ava had a lot of free fluid like what happened in 2020 yet much more. My eyes were shocked to see the amount. The first one is a view from the top. The gray is the fluid. They have no idea where it is coming from and like last year we will not know until they test it. Last time it was some lymphatic fluid cells (not good) along with paranemal fluid. This is our normal fluid around our intestines but why the large quantity is a mystery. 

Here is a view from the front. Again the circled gray is the free fluid. Her bladder is right underneath it. She's been having trouble peeing as well. 

We now understand it is due to the pressure of the fluid. Also you can see her internal organs, like her intestines are smashed against the side wall. Things are way up by her diaphragm tightly too. The good news is that her new diaphragm looks good to them. (It looks super tight to me... yes I'm the over thinking mom.) The diaphragm is a huge concern of mine.

Ava heard and saw everything she told Brian and I. I can't read her mind or express her thoughts but I can tell you my heart ached for her. She knows all too well what this procedure entails and it hurts.

She rested well the next four hours.

She did eat some ice cream and apple sauce in the morning. They said no restrictions but I insisted just soft foods. Good thing I did! The plan is to drain the fluid and place a tube to continue to drain the fluid, first thing tomorrow. 

I called Ava's AMAZING IEP teacher Ms. Kalina and she is organizing Ava's work with all her teachers. She's been such a God send to us for Emeline's high school years and now for Ava as well. We are extremely blessed to have her!! She's the best.

Please pray for Ava and our family. This reminds us of her past hurts and struggles and is very hard to walk this road yet again. We need wisdom for the radiologists and the doctors tomorrow. Last time the free fluid never got fully answered. We must know what is going on and how we can stop it permanently. God bless everyone who reads these words. We are so grateful of your concern, love and prayers. 

"Lord we pray once again for our sweet Ava. We know that you are in contrand that no matter what happens you find good in trials. These is very difficult for Ava and we ask that you will comfort and calm her. Let her get good rest tonight in your precious name. AMEN."

-Terri

Check up Day

 Hello friends. Ava has been busy with school. She is struggling to keep up with online learning. It's so easy for her to get distracted so I've been sitting in on most of her classes with her. This is a whole new world for me. I'm learning things... or maybe I just forgot them! Regardless things are getting done! She misses her friends but we are all about her staying healthy. I believe that three staff members at her school have gotten the Corona Virus. It's sad and we pray that the school stays safe and healthy.

I can't get over how quickly she is recovering from surgery. She feels a lot better now than she has in the past. She goes on walks outside everyday. We are still pretty quarantined to the house just to stay safe.

See how excited she looks.

Mother and Daughter... I was so glad I felt well to go to these appointments. Please keep me in your prayers as I have to go through a lot of testing this month to figure out what is wrong with me. I've been having a lot of abdominal pain and pressure. I'm so thankful that Brian works and I can just stay home and rest. I have faith that it will get solved and I'll be running in no time. Oh how I miss running!

A quick picture without masks before heading up to the doctor's office.

Today we saw Dr. Ebach her Gastrologist (GI). She was thrilled that Ava looked so good. She said that she had looked over her notes about her surgery in July and hospital stay. It was a lot. We are so happy she has healed so well! We told her that Ava was able to go down on her acid reflux medicine since her hospital stay in July. She was really liked that.

My dad said to Ava... "You have prayed so much that you wore your knees out in your jeans." So funny. I love how he comes up with things like that to say! Oh how we have prayed, right friends?!

Next she had a lung function test. She never likes to do them. She is good at the blowing the air out but has it's hard to keep exhaling until all of the air is out of your lungs. She got to test her diaphragm patch today. The technician was a blast. She has been at Children's for a long time and remembers when Ava was tiny. I brought up a picture of Ava doing a test in 2012. She suggested we reenact the picture. We gave it a shot! How adorable is this?

Time sure goes by so quickly! Ava's health is wonderful. We have been blessed that her body is healing and that it is growing. She is now 5'7.6 and 116 pounds. 

For those that are curious here what she does for her lung function test.

Thanks everyone for your comments. We do read them all! They are so encouraging to us! Your love, support and prayers are ALWAYS appreciated. God bless!

-Terri and Ava