Surgeon Appointment

 Hello friends. I know we've been away... way too long. Life just is going by so quickly. Like before no news usually means all is going well.

Ava saw her surgeon for a checkup today. He was super happy to see her looking so healthy. Her last major abdominal surgery was in 2020 when he did a massive redo of her intestines and a larger gortex patch. We are thanking God for her continued health. She's also doing amazing in school as well!

She is 5'7 (almost 5'8) and weighs 123.

Thanks for checking in. We love your continued love and support.

Late update

 Hello friends. I hope you are all doing well. I apologize for not keeping the blog current. Ava has had a few hospital stays and procedures due to her abdominal free fluid cysts cauding pain. She is such a strong young lady. They tell us it's due to scar tissue and the only way to relieve the discomfort is to go back in and clean up her insides. So we are waiting until her pain is greater than a 7 or 8. I don't want to think about another 9 plus our surgery. I thank God for protecting Ava. She's now 15 and a half.

She also got her driver's permit. I can't believe she can drive!

Thanks for checking in and for your continued love, support and prayers. They are so much appreciated!

-Terri

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