The trip to ICU to remove Cameron's mainline had alerted staff to the seriousness of Cameron's daytime sleeping problem and people came in to discuss it with me. Nobody could figure out why Cameron was not responding to any medication. They tried everything they could think of to make Cameron sleep at night.
One day I was chatting with my mother in law and a single comment changed everything. I was lamenting the fact that Cameron was not responding to any sedative and she casually remarked that he was just like Pop. What? Oh my goodness, could this be a family trait?
That evening when our doctor came around for his evening rounds I told him what she had said and he looked at me and said - well, lets take him off everything and see what he does. Can't hurt. By this stage he was taking a combination of drugs in an effort to get him to sleep. That night he didn't have any.
It didn't happen overnight but it did happen. We had to let the drugs that had built up in his little body subside and when it did my baby woke up and he finally slept when the sun went down. I am not going to say he was perfect because he wasn't, he still woke during the night like other children do but he got his days and nights around the right way and I started to get some sleep at night. It was wonderful.
When people came into our room during the day they saw eyes instead of eyelids and it was easier for the therapists to work with him because he wasn't as tired during the day. Up until now he had been woken up for therapy and wasn't really fully awake.
You would think with Cameron finally free of all attachments and now figuring out day from night I would be feeling relaxed and content but instead my anxieties were rising again. Talk started to switch from Cameron and his condition to when we would leave hospital. My stomach was in knots, the hospital was now my home and I was not prepared for what was outside. The world I knew was gone, how would I cope and what would I do.
Everything was different, I wasn't me anymore and Cameron wasn't Cameron. Our home wasn't there to go home to and Michael wasn't there for us each day. How was I going to recreate our lives?
One day I was chatting with my mother in law and a single comment changed everything. I was lamenting the fact that Cameron was not responding to any sedative and she casually remarked that he was just like Pop. What? Oh my goodness, could this be a family trait?
That evening when our doctor came around for his evening rounds I told him what she had said and he looked at me and said - well, lets take him off everything and see what he does. Can't hurt. By this stage he was taking a combination of drugs in an effort to get him to sleep. That night he didn't have any.
It didn't happen overnight but it did happen. We had to let the drugs that had built up in his little body subside and when it did my baby woke up and he finally slept when the sun went down. I am not going to say he was perfect because he wasn't, he still woke during the night like other children do but he got his days and nights around the right way and I started to get some sleep at night. It was wonderful.
When people came into our room during the day they saw eyes instead of eyelids and it was easier for the therapists to work with him because he wasn't as tired during the day. Up until now he had been woken up for therapy and wasn't really fully awake.
You would think with Cameron finally free of all attachments and now figuring out day from night I would be feeling relaxed and content but instead my anxieties were rising again. Talk started to switch from Cameron and his condition to when we would leave hospital. My stomach was in knots, the hospital was now my home and I was not prepared for what was outside. The world I knew was gone, how would I cope and what would I do.
Everything was different, I wasn't me anymore and Cameron wasn't Cameron. Our home wasn't there to go home to and Michael wasn't there for us each day. How was I going to recreate our lives?
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