The last straw!

I was fed up. I know my daughter. I felt like I was watching her slowly deteriorate right in front of me. I am not sure if it was that she wet her pants again at school, the black circles under her eye's, or that gut instinct that said "I know something is wrong". I called the neurosurgery department at about 1:00pm. I got the nurses answering machine and left a message. I basically said I needed to know where else I could take her. I told them I would fly anywhere in the world. I knew something was wrong and I felt like I was letting her die just sitting around listening to a bunch of doctors who were not listening to me. I knew her and I knew some thing was wrong.
To my surprise I got a return call pretty quick. The person on the other line was an intern. He asked me a few questions. I gave him a short run down of what was going on and he said he was going to review her scans and call me back. It was a half an hour later that he called back and told me...." We have been comparing all Avri's CT scans for the last year to a bad scan" In otherwise she needed surgery, she needed surgery this entire time. That first scan that was taken in the ER was compared to a scan that was taken in the ER when her ventricles were big ( a time that she had surgery) He apologized, asked me when the last time she ate was and said how soon can you get her up here? He told me to go straight to the ER where he would alert the staff and have them ready to take her back. He also said he would book the OR and have her Neurosurgeon ready for her.
Despite the intense anger I should be feeling, I was so grateful that someone had listened to me and found the mistake. I was out the door and arrived at the Hospital 45 minutes later. We were ushered straight back to a room and had people left and right drawing blood and hooking Avri up to machines. It was just a couple hours later that she went back for surgery. These shunt revisions are always scary because there are the same risks as any surgery. She is put out they open up her head and take out the tubes and drains that have been in her brain. They usually have to drill another small hole in the scull and put new drains into her ventricles in her brain then they make in incision in her belly and thread the tubing through and connect everything. She has the risks of infection, stroke, brain bleeds, brain damage. It is an hour of praying and hoping that she will come back better than she went in.
Usually the surgeon comes down to the surgery waiting room and lets you know when he is done. He tells you how things went and what exactly they did. I got a phone call saying she was out and I could go down to recovery to see her. She came out of it very fast and we were able to go back to her room. My husband and I were sitting at her side when the Surgeon came in. He looked somewhat defeated. It is one of those looks that makes your stomach sink because you think some thing has gone wrong. " In this case it was just a whole team of doctors who did not listen to a devoted mother for way to long" He put his head down and said that everything went very good. He was able to take out the shunt and replace it with a new one. He then said " her pressure in her head was so high that when he opened up her scull liquid sprayed out" he said she should feel much better and that he was very sorry. My husband was immediately so mad, he wanted to know who was going to pay for all this and who was going to own up to all the suffering and pain Avri went through. All the Dr could say was "I am sorry" and he walked out. This all seems like finally!!! She is fixed good to go. Recovery in the hospital is usually 1 day and she is usually back to herself with in the next day or two. This was so not the case this time around. We were in for a long bumpy road.