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!