One night I woke up Mommy and Daddy because I was having seizures. They rushed me to Elkhart General Hospital where the doctors and nurses performed tests on me. All my tests came back clear so they sent me home. Unfortunately, I continued to have seizures so Mommy and Daddy called the family physicians. He wanted to see me right away! My visit with him resulted in me being taken to Memorial Hospital for more tests. As soon as Mommy and Daddy arrived with me there, the doctors began running tests on me again to see what was causing my seizures. Would you believe all my tests came back clear again?
The next test they did involved a really big needle! They explained to Mommy and Daddy they were going to do a spinal tap which could give them a closer look at what could be causing my seizures. These tests were wearing me out, but even as I slept I could hear the doctors tell Mommy and Daddy that I have spinal meningitis. They also found tiny pin holes around my brain which were bleeding. They put me on seizure medicine which made me sleepy. But in order for the holes to heal I needed to be asleep. During this time I was very quiet and did not move at all. I heard the doctor tell Mommy and Daddy this could be the sign of a stroke caused by a lack of oxygen to my brain while having seizures. I hear the fear in Mommy’s voice as she and Daddy talked. They talked about putting me on antibiotics to treat my spinal meningitis and keeping me in the hospital for 21 days. During this time, I had another test done. I had to have another MRI.
The MRI was done to see the progress of the bleeding on my brain. Unfortunately, they found I have what the doctor called encephalomalacia, this is a fancy doctor word for brain infection. It causes my brain to soften and spreads throughout my tiny body. The doctor said this was myoclonus. He explained it to Mommy and Daddy that other effects of this could be seizures and bleeding on my brain and cause cysts to form on my brain. I know Mommy and Daddy are scared and worried about me. The doctor told Mommy and Daddy that they are going to put me on oxygen, but if they can’t get the seizures to stop they will need to put me on sedating medication that will stop my breathing. If this is done, I will be hooked up to a machine which will breathe for me.
Mommy and Daddy think I am just sleeping because I don’t move and I don’t cry. But I can hear them tell me how much they love me. Right now Mommy isn’t working so she can spend every moment she can with me in the hospital. Daddy is trying to work, but he gets called away frequently to deal with circumstances that come up at the hospital. Even though I can’t tell them, I love my Mommy and Daddy very much. I don’t know how long before I go to Heaven, but I want to make sure Mommy and Daddy are taken care of.
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