It couldn't get any worse

OMG.. I don't know where to start.

Thursday, Friday and Saturday were all great days full of cuddles and laughter. When I went over to the hospital on Saturday night at 6.45pm, our room was closed off so I asked the nurse at the desk when it will be open again. Raphaela's nurse came out and told me that she had taken a turn for the worse and needed to be re-intubated so would once again be on full ventilation. I waited in the parents lounge and once they had done that the nurse came and got me so I could go in and see her. An echo (utrasound) had been done in the meantime and her heart function was very poor. As she only has one ventricle to pump, it just wasn't coping with the job it had to perform. A few hours later, another echo was done and this one showed that her heart function was back to normal as it had been for the past few weeks. I thought the crisis was over so at about midnight, I returned to the house for bed.

Oh how wrong I was.

I got a call this morning from Raffy's nurse. I can't remember alot of what she was saying as she had woken me up but I do remember her saying 'Would you like to come over??' I didn't think it was that urgent because she asked me if I would like to come over instead of please come over straight away. Anyway, I threw some clothes on and raced over to the hospital. In the 3 mintues it took me to get over there, Raphaela had gotten even worse and had a cardiac arrest. I was immediately taken to a private room and sat down with Igor (surgeon) and two other people. Igor quickly told me the situation and asked me to make a decision. I had to decide whether to let Igor put her back on ecmo or to let her die. I was trying to comprehend what the hell was going on and then to be asked to make a decision like this. It is every parents worst nightmare. I had three pairs of eyes just looking at me waiting to hear my decision. I blurted out 'Lets get her back on ecmo' and Igor was literally running out the room to go and do it.

I rang Fred and explained what was going on. He organised himself and the kids as quick as he could to come up here, stopping to drop the kids off at their nanny and poppy's on the way. I think he was a bit shocked at it all too as he had only been here on Friday and had seen how great she was looking.

After things had settled down, the doctor took Fred and I into the meeting room for a chat. He sounded very pessimistic about the whole situation. That is one thing I have noticed here, one person will be very positive but the next will be negative. Anyhow, he explained to us what was going on and the fact that everyone is quite worried about Raffy now having severe brain damage. This is also a big worry to Fred and I also but we won't find anything out for a few days until she can have a cat scan.

And here is the ironic part of the story. This whole episode has been caused by an infection that Raffy has caught from being in hospital.