Beginning

I am starting this blog about us as a family. We have been going through some experiences since March 2011 that I never thought would affect my family and me. In March 2011, our son Aidan had a febrile seizure from a high fever. He was rushed to the hospital by ambulance. First experience in an ambulance. At first they said oh it's just a virus and he will be fine just take him home. The whole night was nerve racking. We got up every three hours to try to keep his fever under control. The next morning he started to throw up and keeping nothing down. I finally told my husband that I cannot take this anymore, we are taking him to a children's hospital. We took him and they said they cannot keep his fever down, he needs to be transferred to the main hospital. At first I was strong. Aidan and me decided to ride in the transport ambulance and my husband would go home with the other two kids. My mom would drive to the hospital and meet me there. Aidan finally slept in the ambulance. I started to call everyone. I thought I could be strong but when I called my good friend Kayla I just broke down. This is my son in an ambulance. Did I do something wrong? That night he had a spinal tap and that came out negative. We were in the hospital total of 5 days and they said he just had a virus but they didn't know what kind. Viruses can do that to people. They said in a month I should follow up with a gastrologist doctor but nothing should come of it but his liver enzymes were high still. We finally got an appointment for a gastrololgist about 6 weeks after. They drew blood and said they should get them back in a few days. They called and notify me that his liver enzymes indeed went up and we need to go see a liver specialist. I got appointment for them about 6 weeks later. They took blood yet again and said they are just gonna watch and see what his levels were. Within six weeks his levels went up about 100 points. They said okay now we are concerned. It might be this but might be that. I said okay. They ran all kinds of tests. Almost at the end they were calling my pediatrician to let her know that she might need to call us and tell us that Aidan's body was going against his liver and there is nothing they could do for him because everything coming back negative for any diseases and infections. About the next day they consulted another doctor and ran a few more tests and they figured out his ALT'S and his AST's were high because of muscle problem and his CPK were 30,000. The high for a human being of CPK is about 250. So they knew something was up. We went and saw a Rheumatoid doctor and she said its not any arthritis of any kind or a metabolic disorder. He is probably needs to be seen by a neurologist. In the mean time the liver doctor was very concerned and could not understand what was going on with him. They called me on a Thursday to notify me that on upcoming Monday they were admitting him in the hospital so all the doctors could come see him and they could run more tests. I was devastated. I knew that was a right choice but I knew that he would be touched and messed with all the time and that we would not get any sleep. We have tons of support from family and friends but I still felt alone. I knew that people knew I was hurting but that's my son, that is my baby. I don't want nothing wrong with him. I had a few days to process that were being admitted so Monday I was prepared. My mom and me took Aidan to the hospital to get settled. Getting blood was horrible. They had to poke him so many times. Then they had to put in a IV in him and that took six tries. I was heartbroken. I just wanted to yell Stop,don't touch him anymore but I knew in my heart they weren't hurting him it was for his own good. That night he didn't sleep at all. Tuesday night we found out he was having a liver, skin, and muscle biopsy. They said they didn't think anything was wrong with his liver but they wanted to make sure. He did very well. They figured out Aidan is a very strong boy and he has a high tolerance to pain. We went home the next day but now we had to wait on the results. Liver results came in first. His liver is doing fine. For the skin biospy they just froze it just in case they need it at a later date. Finally muscle biopsy came in. Guess what it says. Nothing. Its says he has abnormal muscle with necrosis and regeneration. It does not say what he has. They all think he has MD but each day I hope its wrong. The doctors were all surprised that the muscle biopsy didn't come out and say what was wrong with him. I went back to liver people and they said we needed to see a MD doctor and a genetics. In the mean time he had blood work done. When he was in the hospital his CPK finally went down to 15,000 which is great half of what it was. Now its back up to 28,000. We have an appointment with the MD Clinic on Monday. I am afraid for him and for our family. I keep thinking of his happiness and how nothing has brought him down. He is a thriving 21 month old. People say he is lucky to have us as his parents but I tell them no we are lucky to have him.