heart disease progression

Ethan was excited about starting school. He had had a couple of months off so was ready to go back and see all his friends and teachers. Everything was ready; his lunch was made, bag was packed. But during the night he developed a temperature. I gave him some more panadol but it didn't seem to help. By the morning he was also in a lot of pain and his breathing was erratic. I decided to take him to Monash for IV antibiotics. I spoke to the Oncology team who admitted us into the Childrens Cancer Centre rather than waiting in emergency. They quickly did a chest xray to find his lungs showed no signs of pneumonia. This was not what I wanted to hear. He had chest pain, fever, fast breathing and coughing but his lungs were clear. The doctors informed me his heart disease had progressed and that they needed to insert a pump for pain relief. It was devastating. I always knew one day I would be told that and I had tried to prepare myself but no logic and understanding of his palliative condition could have stopped the aching I felt.

I wanted to ring Luke but I couldn't talk. I eventually built up the strength to mumble it's not good, it's his heart, come. By this stage Ethan wasn't moving, just laying there stiffly making a horrible breathing sound. A relaxant was added to his pump to help. During the admission Ethan also had some blood taken. The blood tests didn't show us anything. There was no underlying infection or inflammation.

The next few hours are a bit of a blur of pain control and crying. I wanted to ring people but couldn't. I didn't know what to say. There were questions to be answered and I didn't have the answers. Why should he have to suffer with this and why should the girls have to watch their brother die. I couldn't think of anything else. I eventually rang the grandparents. Not easy.

The next day I managed to start telling people but we still didn't know what and why. So we didn't know what to tell people. Since then we have had doctor meetings and doctor meetings, information and more information but it doesn't matter what they say, it sucks. We know there is nothing they can do to help other than pain control, we know it is getting worse and that one day he will die but there is still a big question mark as to how and when. No one knows.

We are all coping ok. It is harder to deal with when he is lying there not moving and crying but when he is break dancing on the floor and smacking the nurses on the arse, you have a big laugh.

We will be in hospital until the pain is under control.