Friday, 6 May 2011
Why Cameron is No Ordinary Kid - Part 12
The results arrived from Cameron's tests and we finally knew what type of Meningitis we were dealing with. Cameron had Pneumococcal Meningitis.
Since we were totally lost and had no idea what we were dealing with our eyes were open for anything that would help us understand. Quite often when you are looking for something it is right under your nose and in this case it was next to the kettle, under our nose. Michael went into the parent room to make a cup of coffee and noticed a brochure from The Meningitis Centre - now we could finally see how to spell Meningitis and Pneumococcal.
We discovered there was a whole organization for this disease that we knew nothing about and there was support available and information. We were thrilled, there were other people who understood and we were no longer alone. We handed brochures out to our families so they could get a better understanding of what was happening and why.
We wanted to contact The Meningitis Centre straight away but the ICU staff asked us not too. They felt it wasn't appropriate. We followed their guidance and waited.
Easter was a few days away and someone from the hospital administration arrived and handed us a huge basket of easter eggs from Cadbury's. The basket went up on the window sill with the growing collection of cards, flowers and gifts. Space was filling fast on the window sill and it was a lovely bright spot to look at in the room.
Phone calls were coming into the ICU. The doctor who had been treating us in our home town rang to find out what had happened to Cameron. He spoke to the staff and was upset because he had not correctly diagnosed Cameron but he had never seen Meningitis . The RFDS staff rang to see how there patient was doing. And our friends rang.
It was very difficult for our friends. Our friends who lived in the country were able to have their phone calls put through to us while our friends in Perth could not have their phone calls put through. People were getting frustrated. Friends and family were trying to pass messages and keep up to date the best they could. A few friends came into the hospital but weren't allowed into ICU because the family took priority. We would step out and see them for a short while and try to explain what was happening. Everyone was very upset and confused.
One phone call stands out from all the rest. It was at night and our friends rang from our home. They were standing in our kitchen in front of the dishwasher. They had realized there were dirty dishes in the dishwasher but they had no idea how to work it. They were ringing to get instructions. I stood out at the nurses station having the weirdest phone conversation while trying to explain to them how to check if there was powder in the dispenser and how to turn the dishwasher on. They had no idea what they were doing and the end result was a broken powder dispenser. For the next 10 years we manually operated the dispenser. We'd turn the dishwasher on and when we heard the motor reach the point where the powder dispenser would pop open we would rush over, stop the machine and put the powder in. It's funny to talk about now. We were so grateful to our friends for everything they did for us during that very dark time in our lives and they continue to be extremely supportive and play a major role in our lives today.
We watched other patients arrive and leave. We became emotionally caught up in the drama of their struggle to stay alive and we would have chats with their families when they went into the parent room to make a cup of coffee. All the parents were very supportive of each other and felt intense pain for the other families despite what they were going through themselves. We would feel so elated when a patient was wheeled out of ICU to be admitted to a ward.
By Easter Sunday we were the only patient in the ICU and we were the only patient for a few days. Something very sweet happened for Easter. A nurse we were getting to know was being Christened. She was so excited and the staff were excited for her. She came in to see everyone and share her special day.
Meanwhile staff were sent off to work on other wards because they weren't needed and the opportunity was taken to clean out cupboards. Michael helped clean out a supply cupboard for something to do. We watched TV, Michael watched the football and we listened to the machines ping and pong, whirr and whizz, ding and dong. We became so familiar with the machines that occassionally a nurse would ask us to reset a button or two because their hands were full and the sound of the alarm was beyond irritating.
Cameron continued to lay there unresponsive, becoming bloated as a result of the fluids and medications being pumped into his body. It was starting to feel like we had been there forever and would stay there forever. Reality was slipping away.