Lets take the bandaide off!

It was about one year after all the seizures started and the other nerological issues Avri had started. I had called and finally got someone to listen to me, and she had already had her shunt replaced.
It was only about a week after her shunt replacment that we ended up back in the ER. Her nero surgeon came in and sat down with Matt and I. He said "so...we have kind of been putting a bandaid on Avri for the last 8 years" " Ican put the bandaid back on and send you home again or we can fix this", It is going to be a long process to fix it!" I was shocked. How could it be that I never knew this. I am the mother, I put on the bandaides. The doctors fix things. What the crap! EXPLAIN!!! He went on to say that he thinks she needed studies done to find out where the fluid was going and what was comunicating and what was not. He flet that there was more going on than just a blocked ventrical. He said it would entail taking out her shunt and her reservoir and putting external drains in her head so they could shoot colored dye in her brain and then do ct scans to see where the fluid went. Then come up with a plan and put in new shunts but before they could do that they had to wait for the fluid to drain clear becasue puttin gin the drains would cause bleeding and it would take a few days for it to clear up. He was thinking maybe two weeks in the hospital, but we would leave knowing what was going on and why. At this point we had been going through so much and felt it was fair to say Avri deserved to be fixed once and for all.
We chose to take the bandaid off and go for the permanent solution. The studies were very helpful. The ct scans showed that the comunication between the two lobes of Avris brain was non existent. They put the dye in one side and then had her lay on the other side for an hour to see where the dye ended up. Scans showed that is did not go anywhere. So they did the other side with the same results.
At this date in time Avri still had the reservoir in the one side of her brain because of the cyst that sat in the way of her ventrical. Enough time had gone by that the technology was now avaliable to remove the cyst. So that was the next step. Take the cyst out put in the external drain tube again and wait for the fluids to clear so they could put in a second shunt. Just so you know an external drain tube is a tube that they surgically put into the ventricals in the brain and then kind of sew it into her head and instead of it draining into her abdomin it comes out of her head and drains into a bag. They can then put dye or clamp it all from the out side and have instant access to her brain.
I had noticed one day while in the nero clinic that there was a new procedure they were doing with kids like Avri where they surgically went in and opened up the third ventrical. In doing this procedure the third ventrical took care of everything and there was no longer a need for the shunts. I asked why they could not just do this procedure and the surgeon said she was not a canidate because of her brain anatomy. They simply could not get to the third ventrical safely to open it up.
Avri had so many people praying for her. We had a fast for her and she had a blessing. She went in for surgery to remove the cyst. She came out of the surgery. Matt and I were sitting in her room waiting when Her surgeon came in and said "everything went better than we could have ever expected" He said " We were able to go in and safely remove the cyst and as he finished up the third ventrical presented its self to him. He said "it was right there, so I went ahead and opened it up for her" "SHE IS SHUNT FREE". Holy cow...Matt and I both just started to cry. This was a mirrical. For the first time in Avris life other than her first few days of life she was shunt free. She was tube free. Her head was all closed up and functioning on its own. We could not help but thank our father in heaven for hearing all the prayers and answering them with more than anyone ever asked. We were imediatly on the phone telling our loved ones of this great thing. I felt more blessed and loved at this point in my life than I ever had. This would change our lives forever. This meant no more surgries. This meant that Avri had a chance for a normal life if her brain could heal from all the trauma it had undergone.
We were able to take Avri home the next day. We were all walking on clouds. Our joy radiated to Avri. She did not understand it but she could feel it and knew that what ever happened was good. This joy was very short lived. It was only a couple days before we were back in the ER with a very very sick child. The scans showed very large ventricals. The procedure did not work and she would need two shunts put in her head. This news was a huge let down but this is the life we knew for her. I did not understand why I had to experience the thoughts of wittnessing a modern day mirrical. Maybe just to see if I had the faith. I am not sure but we went with the flow and started from the beginning.
Avri had her shunts placed two days after the drains the surgery went great and the plan was to send her home the next day. Although that is not what happened. I woke up to a hurried rush around the room and asked what was going on. One of the nurses said Avri has staff infection in her brain they are rushing her back to surgery to take out her shunts. I understand the rush in the event but before I knew it Avri was wisked away and I was left in the room to let what I was just told sink in.