Day of surgery

It was a long day for me. We left real early in the morning to go to the hospital. I got there and knew something was up. Daddy and I were starting to watch Cars and I saw a lot of movement, which scared me. Daddy kept telling me to keep watching the movie, but I knew something was up. They put me on a table and Mommy and Daddy were with me and I went to sleep. I don't know what was going on but I knew it was big.

I woke up and boy was I REALLY scared and in lots of pain. I was SCREAMING!!! I couldn't lift my head up. I heard that I nearly died. I don't understand what that means but it sounds scary. I was in surgery for 2 hours. I have a mass on my brain. Well the doctors did not realize that it was bigger then they thought and they were having trouble. They finished my decompression but I was slowly getting worse.. So they had to stop.  Now I am having trouble with something called my pulse ox. I get breathing treatments. I am still critical but holding my own. I am strong so I can beat this.

Please look over my Mommy and Daddy. I need them to hold me and tell me everything will be alright. I can't wait to go home. I don't like the hospital.

The doctors say my next surgery will be about 17 hours. That is really long. They will cut my head in half!! Insert some tubes and a shunt. I don't think this is good. That sounds really scary.

Well I am getting tired and need to rest. Please keep praying for me and hope for a miracle.

Love,
Isaiah

My Thoughts

Monday, August 1st,  I will have my very first major surgery ever!! I am afraid of the doctors. I am not sure that they will remember to put my head back on!! Pop-Pop said he would make sure they use A LOT of super glue. They are doing a lot of things that  I don't understand, but Mommy does. They will decompress my brain so I have more room and my brain doesn't get squished. I don't want my brain to get squished. That is scary. Then, they will remove a disc from my neck so I have more room in my throat. I had my tonsil and adenoids taken out, but that didn't help. Sometimes when I swallow, I have a hard time and I end up throwing up. I get embarrassed but Mommy and Pop-Pop say it's OK. I don't mean to throw up. They say they have to do a bi-opsy on a mass that is in my brain. They say it might be cancer. They just don't know. If it is, this surgery really can be dangerous for me. They will remove tonsils that are in my brain. This causes a cyst that i have in my spine. Sometimes, the herniated tonsil can obstruct the flow of fluid from the ventricles.
In this case, embryonic passageway in the brain stem can cause my cyst in my spinal cord. The syrinx can cause weakness and numbness, which can become permanent.

I have had some bad blood test. I also have something called JRA (Juvenile Rheumatoid Arthritis). I am a strong boy, but my hands are really weak. I have something wrong with my bone marrow and I may need a bone marrow transplant in the future. So I have to have a spinal tap done after my recovery. I have to see a cancer doctor and a blood doctor. I am scared, but my Mommy is with me all the time. A very nice nurse showed me that with this special light, you can see you have blue veins. She showed me that they are in my arms, legs, and tummy. She was really nice. I showed my Pop-pop my blue veins.

OH!! I almost forgot! My Daddy is coming home for my surgery!! Mommy said I am a very special boy because the Army is letting my Daddy come home. He will be here the day before and leaves the day after my surgery. My Daddy makes everything better. There are other things they will do during surgery. I will show them I am a big boy. They say I may not be the sweet little boy I am now. I may become violent and angry, but we are hoping that won't happen. Well I will let you know how I am doing after surgery. Thank you all for praying for me. I love each and every one of you.

Love,
Isaiah

Introduction

My name is Isaiah. I'm only 2 years and 8 months old. I have been diagnosed with Chiari Malformation. I have gone through so much in my short time here, but that doesn't stop me from trying to be a normal boy. I'm all about running around and playing, jumping, and doing all the things that boys do. I'm also Mommy's big helper. I have a new twin brother & sister. I love to help Mommy take care of them. But as of lately, I find it hard to do certain things now. I'm preparing to go in for a surgery. I don't understand why Mommy would let the doctors hurt my head. But I trust that she is making the right decision and trying to help me beat Chiari. This is my story & journey with Chiari Malformation Type I...