This is the first picture I took of any of Avri's surgeries. As you can see they were not to terribly bad and she does not look effected pain wise. I think this was the day after her second reservoir was placed.
By the time Avri was 3 years old, she had already had 7 nero surgeries, 2 of the surgeries were to place a reservoir and the rest were to replace failed shunts! The very first time the surgeons decided some thing was defiantly not right, they found a cyst deep down in the opposite lobe that her shunt was in. They said this was caused from trauma from the first surgery. The cyst was growing and causing pressure on her brain. She seemed fine on a mental point but she would be playing and all the sudden she would projectile vomit and then would return to her normal play. Avri never complained of headaches. She was so happy it was hard to believe that we were going to have to cut into her when her only symptom was vomiting. We were in the mall one day walking through Macy's and she threw up in the isle and just kept on walking like nothing happened. This was how normal vomiting had come to her.
This cyst was not in a place that would be safe to go in and remove, so the doctors decided to insert a reservoir. The best way to describe this is it looks like a mushroom. A hole is drilled in the scull above where the cyst is and then they insert the stem down into the center of the cyst. Then the self sealing top is placed over the scull hole and attached to the stem. After the device is placed they pull the skin back over the top and sew it up. This allows the surgeons to drain the cyst without an open surgery. They simply take a long syringe and very carefully insert it right through the mushroom top and down the tube and pull the fluid off. We went up to Primary Childrens hospital about every 6 months to have this cyst drained.
This seemed like a great alternate to some invasive surgery that could cause major brain damage. The first problem we ran into was this. I thought the bump on the top of Avri's head was very large like half of a golf ball just resting there. The surgeon said this is normal and her hair will cover it. We discharged the day after the surgery, and in the back of my mind this surgery sight never looked normal to me. I brought her back to Primary children's hospital the next day and the surgeon said it looks red and maybe a little irritated so he gave me a prescription cream to apply to it. The next day I looked at it and thought this is so wrong! I called again and they said if she did not have a fever then nothing to worry about. I called a second time a few hours later! Same thing "you are probley just seeing a scab form and it is normal." Closer to that evening I called again. I had been giving her a bath and standing directly over the top of her I thought I saw a silver shimmer deep down. I called again. This time I had their attention. The doctor said to bring her up as fast as I could because it sounded like the reservoir may have split the skin apart and this meant her brain was exposed. I remember driving 90 miles an hour the entire way to the hospital. Avri sat calmly in the back seat as if nothing were wrong. I ran her into the ER and the admitting nurse told me to wait in line. I told her I had called and nero surgery was waiting for me. Can you believe she still gave me a hard time about waiting my turn! I don't remember my exact words but I got a bit hysterical and told her just to look over the top of Avri's head. She listened and within 30 minutes Avri was already back in surgery! I think we spend a week in this time around. What happened was the top of the reservoir was to big and had split the skin right open.
It still hurt to see Avri with incisions on her head. The true reason in my mind that I decided to start taking pictures was because I realized that I was going to have to fight for her health. I did not know what the future was going to hold but I knew it was going to be a fight always. There is no better way to document than pictures. I remember thinking these doctors are the pro's they are the ones who know everything so they must be right. The one huge thing I learned was I am the mother and no amount of training can teach you how to read your child or to listen to that gut feeling that tells you some thing is not right!
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