My Biggest Fear

Everyday for over the last year and a half I have watched Crew experience multiple seizures. The seizures are what experts call Myoclonic and Absence seizures. Myoclonic seizures are when the person may have short, sudden, powerful movements of the arms or hands. Crew has been having seizures where his eyes roll around and his body jerks really quickly for only one or two seconds. Then it is over and he is right back with you laughing and playing as if nothing ever happened. They have been very short but really frequent averaging over 100 times a day. When this happens I usually go on as normal and attempt to ignore it. However, deep inside it hurts... a too frequent reminder of Crews brain injury.

Absence seizures may also be called petit mal seizures and are common in children. During this kind of seizure Crew usually has a blank stare that comes and goes quickly lasting, again, only a few seconds. I haven't noticed these until recently. I wondered if his "daydreaming" or "lack of attention" was, in fact, another seizure. My friend, who is also a nurse, babysat Crew only a week ago and asked me if it was a seizure. I said "I think so..." and she did too.

After consulting with the neurologist, we had decided that because these seizures last only a second that we wouldn't medicate him. Crew is so full of life. Anybody that knows Crew knows how sparkly his personality is. Because of all the wild side effects associated with medication we felt we were doing the right thing.

However, deep inside I've worried that these seizures would turn into something bigger. And on Sunday night... my biggest fear became my reality.

Crew had been down for a nap for two hours. I peeked in to check on him and what I found crushed my world. His eyes were open, glazed over, no response, body limp, shallow breathing, and evidence of vomit. Shaking him didn't change a thing. I scooped him up, and ran to the front door calling for DH to help me. He saw me holding the baby and came running in followed by my nurse friend. Another neighbor rushed down with her pulseoximeter (spelling?) and hooked him up. His oxygen saturation levels were low indicating trouble breathing. We all looked at each other and the decision was mutual... get him to the ER fast! I ran out the door carrying Crew followed by DH and off to the hospital we went leaving my two boys plus two extra boys that I was tending for the weekend in the care of my good friends.

As soon as we entered the ER they rushed us into the trauma room and hooked him up to the oxygen. We waited two more hours for Crew to "come around". It was a very scary and emotional time for us. Something that I've feared for a very long time. The really unusual thing is that he regained control of his left side before his right side indicating more involvement in the left side of his brain. Seizure medication was started immediately and over the course of the next few months we will follow up with the neurologist and get an MRI and an EEG.

Because of the trauma that Crew experienced at birth (due to placental abruptio) and his history of seizures, the doctors are assuming that he had a Tonic-Clonic Seizure more commonly known as a grand mal seizure. My heart is broken. Last night I slept (or didn't) with him right next to me in bed. Tonight I am trading beds with son #1 so I can be right there in the room with Crew.

On a good note: Crew was happy today! He was 100% his normal bubbly self. For a few hours there, in the ER, I feared that he would be changed forever. Never before have I been so thrilled to be wrong!