The storm!

Ok. So tomorrow came and went and now it is months since I said I would start a new chapter tomorrow. This is what happens in my life. Tomorrow never means tomorrow unless it is an appointment.
It Started in the month of October. Avri was 8 years old at the time. I brought her into the emergency room at Primary Children's Medical Center because she was throwing up. This is what you do as a parent of a child with hydrocephalus. Put some pressure on the brain and it causes projectile vomiting. I am not talking "mom I have a tummy ache get me a bowl" I am talking "mom can I go play ?" then she sprays the door on her way out the door and Say's "wow that was weird, but I feel much better now". Back to the emergency room visit. The doctors ordered the routine CT scans and said everything looks great. She must have a flu or something.
As the "uneducated" in radiology or neurosurgery schooling, we are suppose to trust in the Ct scans and these trained people because they are suppose to know more than us, because technology tells us how we are feeling now days. It is not true but that's how the world turns right!
So the vomiting continues, not everyday but enough that I bring her back the next month. Same thing the scan looks exactly the same. This time they tap the shunt. Fluid is present and clear so must be nerves or maybe she has had the bug a couple times. Some where in my brain I am not buying it already but I have nothing to argue with other than a gut feeling. I bring her home again.
Have you ever been asleep and heard a sound that becomes a part of your dream. This is the new part of my night mare. I dreamed there was a dog sniffing and snorting and wake to realize the sound is coming from Avri's room. I still think that something is actually wrong with the dog. I walk into her room at 5am and Avri is in her bed. She is foaming at the mouth her eyes are rolled back in her head, her head is contorted to the side and her whole body is jerking. I screamed for my husband and then turn into a complete idiot. Yes (you can laugh) I ran out side across the street to the neighbors house. I was pounding in her door. Then think to myself "what the crap am I doing?" So I run back home grab the phone and call 911. My neighbor never answered the door "thank goodness" My thinking "I think" was that she had mentioned that she had seizures and I knew in the back of my mind that Avri was having a seizure but I had never seen one before . Reality is, I was panicked and scared to death.
The EMT's showed up and Avri was still having the seizure. I think they gave her something to stop it because she stopped shortly after they got here. They rushed her to the American fork hospital where they took her straight back for a CT. She was then taken by ambulance to Primary Children's Hospital because the doctors at American fork thought her ventricles in her brain looked big and said that the pressure on her brain was what caused the seizure. Guess what? Nero surgeons at Primary Children's said it was a whole new set of problems or a fluke because her ventricles looked great. They sent us home again.
Now the hallucinations start. I remember on Christmas day the kids had opened their gifts and Avri went up stairs to get dressed. We were all sitting in the living room and she walked down the stairs like everything was totally normal and fine, but her bra was hanging on the outside of her shirt around her neck. I asked her what she was doing and she said "nothing" like it is normal for the bra to be worn like a necklace. One night she walked out of her her down the stairs and into the kitchen and she kept raising her leg like she was trying to go up stairs and I asked her what she was doing and she pointed to the ceiling and said she was trying to climb up the stairs. It became normal for her to open the shoe closet or the door that goes out to the garage and ask in total shock and dismay "where did my room go?" another time she was frantically trying to turn off the water faucet but it would not turn off. The water was not on. She was motioning with her hand as if to splash the water to show me when I told her there was no water. She had even wet in her pants a couple times.I took her back to Primary Children's and they did the routine CT tapped the shunt, tapped the reservoir. They did do blood work this time. WARNING this next part might shock you. They told me to look at my home life, look at things that have changed that might be causing her to act out. They wrote in her chart and the discharge that she had behavioral problems. Now any of you that know Avri know this is so far off. Not even close. This is one of those times that I was so mad I could not even breath, could not think straight. All I could do was turn around in my shocked state and take my deteriorating daughter home.
Now the seizures start on a regular basis. We are now dealing with a whole new set of problems. Instead of taking her in for shunt problems nerology has tak'in over. She is having EKG studies. They are saying everything is because of the seizures and none of it has to do with pressure on her head. We are going through every type of seizure med to try to control the seizure's. Now her wetting her pants and hallucinations are all side effects of the medications. As her shunt is not the root cause of any of this. We go from extreme head aches to sedated to throwing up do to uncontrollable eating. This is a night mare.