On April 26, 2006 the tests began. Blood was drawn. He was catheterized. He had another more intense jerking episode. It took longer for him to regain consciousness.
The doctors decided he needed a spinal tap. I was advised that the procedure was very invasive and could at worst leave him paralyzed. They said he will scream loudly and that I could not be with him. I could not wait in the hallway. I could not wait in the waiting area. They advised me and my family to step outside the hospital for fresh air for about 20 minutes.
I held him and cried and prayed. Then I had to go and leave him to this pain. I sat in a heap on the curb outside of ER. I remember rocking back and forth and my mind was racing. It seemed to take forever until the nurse came to take me back to see him.
The procedure was successful a small bandage was on the lower middle of back. He was asleep. I was afraid to touch him, but as soon as I got near him to kiss his head he opened is eyes and I scooped him up.
That was the first of many days that I spent laying in his hospital bed holding and comforting him. They rolled us from the ER to his assigned room in the hospital with me holding him in the bed.
We spent twelve days in the small five room children’s section of the adult hospital located about 10 minutes from our home. The seizures were now more frequent, more intense, lasted longer and eventually required him to be placed on oxygen. But, no one, other than me, family, and friends got to witness the episodes because the arrangement was that when he had a seizure press that call button for the nurse so that medical staff could come to the room and witness it. Not one nurse ever made it to the room in time to witness the seizure in action. They were only able to witness the aftermath.
Through all of this, I saw his pediatrician twice, and the host of doctors that made up this large pediatric group stopped through daily. They all thought it to be reflux and ordered several different formulas until we ended up with the $100 cans of Neocate. But the seizures kept coming.
All of this had changed my baby into a quiet, slow moving and confused little boy. The sparkle in his eyes was gone. His observant was inquisitive nature was history. He was just a shell. I couldn’t take it anymore.
Finally, I got my wits about myself and began to think. I needed a new pediatrician. I immediately called on physician that my OB had recommended long before Shane was born. I looked him up in the hospital’s copy of the YellowPages directory. This physician returned my call a few hours later. This physician, who I had never met, listened intently and spoke with me for almost 30 minutes. He said that based on my observations it sounded like a rare form of epilepsy called infantile spasms. I was advised to request a neurologist be assigned to his case and told that I needed to be at Le Bonheur Children's Hospital.
Upon hanging up the phone, I immediately went to the nurse’s station and requested a neurologist. They stated they would contact my pediatrician and let him know of my request.
I could not believe what happened next.
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