Why Cameron is No Ordinary Kid - Part 10

The nurse asked if we would like to have a cuddle. I had not held my son since I had handed him over to the doctor at the first hospital. I was excited to hold him again and Michael pushed me to have the first cuddle. I settled into the recliner rocker next to his bed and witnessed, for the first time, the drama involved in lifting Cameron off the bed and onto my lap. It felt strange with leads and tubes coming out in all directions but it was my baby and it was so wonderful to hold him again. One of the nurses took a photo of us but then..........Cameron started to jerk and the monitors and machines started alarming, I was terrified. Nursing staff moved quickly to get him back up on to the bed and I got out of the way. He was having a seizure.

I retreated to the window and stood staring at the traffic outside while staff surrounded the bed and looked after Cameron. Watching the traffic was the only way I could keep my brain in reality and I spent a lot of that day staring at the traffic. When things calmed down again I was asked if I wanted to have another cuddle and I couldn't. I was too scared that it would happen again. Michael had a cuddle and the nurse took a photo of him.

Our doctor came in and we asked the big question. Do we need to move to Perth? It was our decision but he suggested that it would be the best course of action for Cameron because he needed medical and therapeutic support and we were not going to be able to get that in a tiny mining town in the middle of nowhere.

My parents returned and we were finally convinced to leave the room and go for a walk - breathe fresh air. It was hard to leave but we did, after a shove,  and went for a walk around the hospital block. Halfway around we sat down on a wall and shared our feelings. We wondered if it might have been better if Cameron had died, was it fair on him to live the life ahead of him.  Then we felt guilty for saying it out loud. We tried to visualize our future and what it meant for our families, our relationship, our careers. We wondered how we were going to cope. We pondered if Cameron would ever talk, walk, lead a normal life. We cried and we felt very sorry for ourselves. It wasn't fair. We had tried for five years to have a baby and now we'd lost him. We had a baby but it wasn't our Cameron.

We went back to Cameron and settled in again. Michael went to get some sleep and family members visited.

As you sit there you observe the comings and goings of the ward and it became apparent, as the day went by, that something was changing in the room next door. A long line of visitors started to come and go. The door that had been kept open between the two rooms because of an air conditioning problem was now closed and all we could see were shadows. One of the staff then came and explained that the young boy next door would die shortly and that they wanted us to know because there would be noises which would probably upset us if we weren't prepared. We sat quietly feeling very sad for the family we'd never met.

Cameron's seizures had worsened as the day went on and even though I was still finding it very difficult I didn't jump as much when alarms started to sound. Late afternoon we noticed the family of the little boy next door walk into their room and it was very quiet and calm. Then all of a sudden alarms started to blare and the mother screamed an awful pained cry. At exactly the same time Cameron's alarms all went off as he had his worst seizure for the day. I jumped, Cameron needed help and his doctor was next door. I was so scared. The nursing staff acted promptly but all I could think was - we need the doctor, why can't he come, that child has died, I don't want my child to die.

Of course he couldn't leave the other family, he had a job to do and they needed him but the fear of losing my baby was so intense. Eventually Cameron was stabilized and things settled down again in our room. The doctor came in and apologized for not being able to be with us. Then we sat and watched as the staff looked after the other family and watched the nursing staff grieve for their patient. It was very touching and you  couldn't help but marvel at what the ICU staff go through.