Ultrasound for Fluid

 Hello friends. A quick update about today. First Ava feels fine. We were at her older sister's house yesterday. She showed them her stomach and her right side was sticking out more than it should have been.  I called the doctor's office and talked to Megan. She quickly made an appointment.

Today she got that ultrasound and we also saw Dr. Shilyansky. He told us the fluid was down a little bit on the right side since removing the drain on Tuesday. I was surprised. I felt certain it had gotten worse. He wants to wait and see. The other fluid collection on the left side was not looked at today. I'm hoping perhaps another CT on the 18th. I insisted on keeping that appointment to recheck the fluid. I also heavily rely on Ava to tell me how she is feeling. She says she will let me know.

The fluid is still there but a little less..we pray it stops producing and drys up. She doesn't need this adding pressure and causing more worry.

She's gotten so tall. These children's beds are so small.

I was hoping Dr. S would have answers for us but quite the opposite. He said... in so many words that it was fluid that was not infected and it was not that bad. She looks good let's just watch and see. He did say announce the procedure that I had kept quite from Ava. I didn't want her to stress before anything was even decided. It was what the radiologists mentioned the other day... that the left side fluid collection was so hidden they could only get to it by going through her lower back. A drain would be placed but it's much more complicated. I agreed for now we could wait. 

I am going to ask if Dr. Shilyansky and Dr.  Mohammad Amarneh can ask if any other doctor has dealt with this before. They say it's rare but don't give us anything more. It's hard for me to deal with the "wait and see" approach. We've done this more times than I care to remember and it never seems to end well. 

He also mentioned it could be ovarian cysts. Huh? So really? So again if it doesn't make sense figure out what this can possibly be, not just "extra fluid that isn't hurting her at the moment". I'm being so patient but I'm going to need more than that.

Thanks friends for checking in in Ava. We again appreciate the support and prayers. God is giving me peace in the midst of this recent storm. Life sure is unpredictable especially lately. God Bless each one of you that reads Ava's blog. 

-Terri

Ultrasound-Drain Removal... More Questions.

 Hello friends! This morning on our way to An ultrasound this morning because of low volume output in her abdominal drain.

Ava's drain was 5 ml's for 2 days in a row and no output at all this morning. 

She was not like herself today and I can understand completely. I know all too well what it feels like to have medical issues with no answers only more questions.  It's awful. I can't imagine being 15 and dealing with all of this!

She looks thrilled doesn't she?

Last week during her hospital stay, they called it "free fluid". I read through the CT results at home (through my charts) the radiologists call it a large cyst. Here is what the reports say...

#1 *CT scan from 11-2-21 Tuesday

Peritoneum: There is a large cystic lesion located in the pelvis and lower abdomen measuring 20cm by 15cm (8 x 6 inches) No soft tissueenhancing mass.

 #2 11-9-21 Tuesday CT scan one week later... (half the size)

Simple RLQ cystic collection is seen with partial visualizationof the uterus. The drain is seen in the RLQ, but the end of the
drain is not well visualized due to bowel. Simple cystic collection measures 10.6 x11.7 x 9.5cm, ( 4.2 x 4.6 x 3.7 inches) which is decreased in size compared to the most recent CT dated 11/2/2021.

You can see more fluid is in the first scan and still half the fluid is still there. Scary, huh?

It gets even more bizarre. The doctor said he could were not get to the fluid collecting. They did a CT of her,  while still in the procedure, on the table. This other fluid collection wasn't responding to the one with the drain in it. He needs to talk to surgery as to what the next step should be. Right now since it's not infected he says it's not emergent. It's so strange. He said she cried and didn't handle the procedure very well. On the way home she explained that during her heart catherization the doctors talked the entire time explaining what they would do next and how she would feel. Dr. A did not talk to her at all. God did bless her with a wonderful nurse who empathized with Ava and quickly comforted her through the entire 45 minute procedure. It's sad she has to endure all these difficult medical situations. She was so upset with the whole situation and with me as well. I understood and was very understanding. She can put it in me I get it. God helped me see it is how she handles tough medical circumstances. I know she doesn't mean anything bad by it. It's how she copes.

We have another ultrasound and then an appointment with her surgeon Dr. Shilyansky November 18th. Dr. A will discuss Ava's results and findings with him and they will come up with a plan. He mentioned a few "options" to me and I do not want to share them as they are very invasive. 

The drain was taken out and we now wait. Ava is to tell me if she has pain. I pray the first fluid collection stays gone and that the second cyst stays secure and does not grow any bigger. I was not prepared for "another curve ball" today. I do know God uses every hurt, pain or trouble. He makes a way when doctors don't see a way. Thanks for your continued love, support and prayers. Good news is she is feeling better so THAT is huge! God Bless.

-Terri

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