Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

The trouble begins

on February 7, 2010

So, it was the 22nd of December and Samuel had spent the night in hospital under observation for a chest infection. He still seemed the same to us so at no point were we particularly concerned about him.  On the morning ward round a doctor thought he heard a heart murmur.  They said nothing to worry about, quite common and they’d sort a scan out.  If they couldn’t get a scan done that day he would be discharged and have to return as an out patient for it.

That afternoon I went with Samuel for an echo cardiogram. Luckily a nurse from the ward also came with us.  The lady that did it sat in silence throughout.  When she finished she asked if he was on high dependency – no he wasn’t. She frowned. She then asked who the consultant on call was as she needed to ring them. She left the room and spent some time on the phone the other side of a closed door.  As a nurse it was apparent to me that some very serious was going on if she felt the need to urgently ring a consultant directly.  When she returned to the room she explained that Samuel had a problem with his aortic valve and that it wasn’t opening properly. She’d also asked someone to come to escort us back to the ward. Two doctors arrived, breathless and carrying an enormous red rucksack.  I knew this rucksack is there for the worse case scenario.  His condition was that bad that they felt it was unsafe for us to walk the 3 minutes downthecorridor to the ward without full back up.  I felt like the nightmare was beginning.  In the middle of this Samuel appears fine – totally ‘normal’ to me.

He was taken straight into HDU where several people started putting in lines, monitoring etc. Another consultant arrived who carried out another echo.  He again confirmed what had been found and explained that Samuel had critical aortic stenosis.  Blood was unable to flow out of his heart and around his body due to an abnormal valve.  He needed urgent surgery and that would mean being transferred to another hospital.  I went out to phone my mum to let her know what was happening. As a walked back into the room I realised the arrest trolley was open, the arrest drug box was open on his cot and there were about 10 people around Samuel.  I was hysterical and taken out of the room by the mother of the girl in the next bed.  Steven had just arrived back at the hospital at the same time and we were both put in a parents room for what felt like an eternity. At this point I thought he was dead.  Finally a doctor appeared and said he was veryunstable,they were working to stabilise him and that might mean putting him on a ventilator.

Finally we were allowed back into see him.  He’d stabilsed on CPAP so didn’t need to be ventilated at that point.  We were told that he would be taken to Oxford for surgery so waited for the ambulance to arrive to collect him.  The doctor that arrived went through many things with us.  I don’t remember much of the conversation really. I remember that I was crying too much to take it in. He did say that his condition was not great and there was a strong chance that he would not survive the journey to Oxford.  I also remember him saying something that left me thinking that we’d be lucky if he was still alive when he started school.  There was something about ‘this is the start of a journey and sadly we sometimes lose children along the way.’ An absolutely awful awful conversation.

We then had to get in the car and drive to Oxford. It was 10pm, lots of snow on the ground and freezing fog. I drove as slowly as I could just so we didn’t catch the ambulance up.  For some reason I just didn’t want to see it. I spent most the the drive wondering how on earth we were going to pay for his funeral.

http://www.patient.co.uk/health/Aortic-Stenosis.htm

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