So Close – Mum Explains
I have never had a day so full of highs and lows as I did early October 2012. It is like the further into this transplant journey we go the higher the highs get and the lower the lows get. I fear for what else lies in store for us.
A day short of our arrival into Melbourne a year earlier, my mobile rang. Mark and I were asleep, Coen was admitted in hospital and Kai was away for a few days being school holidays. The phone call was from the Alfred Hospital. The person on the other end was not someone I was familiar with but that didn’t matter once she said “I am from The Alfred…”. I looked across to Mark who still appeared to be asleep, I shook him “this is it, it’s the call”. There was a 50/50 chance that the lungs would be OK and that Coen had not yet been told and would we like to be the ones to tell him. For sure, that was a moment I had dreamed about for years.
After the call we were actually shaking with a mixture of nervousness and fear. Surprisingly I didn’t feel much excitement like I thought I would. We showered and got ourselves ready for a big day. An ambulance had been booked for 7am to take Coen to The Alfred. We wanted to get to The Children’s with enough time to have Coen fully awake and the news to sink in before the ambulance arrived.
At the hospital the nurses were excited and told us that they had known since midnight as they were told to fast Coen. Of course, at midnight Coen was still awake…and eating. The nurses had cunningly made up a story about having to fast for a blood test the following day, even having to make a fake blood slip up when Coen questioned them. Everybody got to read about it on Coen’s Facebook page as he posted a whine about the nurses coming up with blood slips at midnight.
I woke Coen letting him know there was a bed waiting for him at The Alfred. He was in shock, his first words “not today”, like he wasn’t in the mood for a transplant today. Everyone knows that Coen is at his worst in the morning, feeling off and it takes him ages to fully wake. He started to get the shakes like we had only 45 minutes earlier. We packed his things while he woke and got used to the plan for the day. The nurses kindly asked if Coen wanted his best mate woken who was admitted in the same ward. Kyle came in dragging his machine behind him, rubbing his eyes. The two exchanged some words and brotherly hugs, then the ambulance officers arrived.
I went in the ambulance with Coen while Mark drove the car to The Alfred. Mark got there before us??? In the ambulance Coen put his headphones on and zoned out. I left him to have his space. Every now and then I had to reassure the ambulance officers that Coen was ok when there was mumbled noises coming from the back of the ambulance. Coen was singing along to his theme song ‘It’s My Life’ by Bon Jovi.
The next 6 hours was waiting. Waiting and waiting to see if the lungs would be suitable. They said they should know in a couple of hours. Then they said there had been a delay, which was not unusual. There was now a 75% chance we were on a winner. Coen had to have IV drugs put through, X-ray, breathing tests (it was uncertain whether the lungs would need to be cut down and further testing was needed), shower and meet the anesthetist and surgeon. By chance a friend who is an anesthetist nurse was rostered on for Coen’s theatre session. She came up to say hello and tell us how excited she was, she had been waiting so long for this to happen and to be rostered for the same theatre as well was pure luck. How wonderful for Coen to have a familiar face in the theatre.
The transplant coordinator who was keeping us informed of the progress was in and out letting us know things were still on track. She informed us that we should have the final go ahead ina couple more hours. Coen was sitting there on the bed in his theatre gown. He had kept himself well composed the whole time. We could see he was very nervous. He kept asking how long she could guarantee before she would know if the lungs were good. The co-ordinator thought he wanted a sooner rather than later time and said it shouldn’t be too much longer. Coen was not in any hurry to undergo a major operation and was not being reassured by the “not long now” statements.
Only a minute after the co-ordinator had left us, she walked back in and simply said it’s not happening today. Both Mark and I sat there waiting for her to say “only joking, lets get you off to theatre”, but she didn’t. For what seemed like a second or two there was stunned silence as we waited for the “only joking” bit. Coen’s face broke out into a massive smile and you could see the relief leaving his body and a “yes” come out of his mouth.
The co-ordinator then explained that about 1 in 9 go this far to then be knocked back in the final stages. We were not at any time given any information regarding the donor and no information regarding why this wasn’t a viable set of lungs. However, piecing bits of information together we can assume that the lungs were a great match on the tissue compatibility and very close to the right size. The reason for the transplant to not go ahead may have been due to damage of the lungs either by trauma or the process of death. As I said these are only my assumptions.
We had to return Coen back to The Royal Children’s. We thought we had left to never return, our minds had already moved us forward to transplant and life thereafter. We had cancelled appointments, informed close family of the call and started to think of how life was going to be different and we started talking about ‘after transplant’, the types of conversations we used to have when transplant was a new and refreshing thought. Now, we had to take ourselves back to bi-pap machines and the unknowing of when or if another call will come. We are well aware the clock is ticking.