Three weeks ago today, Brett was happily at our home discussing what was for tea and chatting about the football match that was on TV later that evening, all pretty normal stuff.
He had been experiencing the same amount of weakness in his legs but had finished the course of high dose steroids on the previous Sunday.
At 12 Midday Brett mentioned his back was sore, I took a look and was surprised to see that his lower back was swollen and bright red. I rang the hospital and much to Brett's disgust, we were advised to go straight in for a quick check up.
I had called my husband home from work because I had a strange feeling the back was a bad side effect of the steriods.
My husband arrived home within half an hour and we began trying to get Brett up out of the settee, but we couldn't move him.
After a lot of pushing, shoving and panicking I phoned the hospital back and they advised me to call an ambulance immediately.
The problem was, an ambulance is supposed to take you to the nearest A&E department which in our case is not Birmingham. Our hospital advised us to try and negotiate with the ambulance drivers to see if they could override the rules and drive us to Birmingham and not our local hospital, they said 'if you have any trouble ask them to speak to us.'
My heart skipped a beat when we had no problem what so ever, the ambulance even drove with blue flashing lights.The ambulance men were concerned, very concerned and totally agreed that Brett needed to go to the hospital that was up to date with his complex case. By now Brett was vomiting a dark green substance and was in absolute agony all over his body.
When we arrived at hospital 20 minutes later, all hell let loose.
A nurse quickly conducted a set of obs and loudly advised the other nurses and doctors that Brett was Code 4
I asked her what code 4 meant.
She pulled me aside and said 'his heart rate is too high, his blood pressure is too low, his temperature is dangerously high and his oxygen level was falling, code 4 is pretty serious.'
The next few hours are a blur.
Nurses and doctors came from everywhere to work on him.
I was advised that my husband had been called to come in.
He had initially remained at home to collect our daughter from school and to await news via the phone.
I repeatedly found myself being pushed further and further away from Brett. I didn't mind at all because I realised how serious the situation was getting.
Tears started stinging my eyes when I realised he could be dying, I kept thinking 'Not after all he's been through, not after all the pain he's suffered over the last 5 years just to get here ....not now'.
As soon as Kev arrived we were both taken into a side room by our normal Consultant and a nurse from the transplant team.
We were given the devastating news that Brett was being stabilised for the move to Intensive Care and we needed to understand he was extremely ill and as he had no T-cells or immune system yet... the situation was precarious.
They feared he may need surgery as his stomach was swelling massively and there could be a blockage in his bowels or his appendix may have burst.
Surgery would only be performed in a life or death situation as, in Brett's post transplant stage, any surgery would be life threatening.
They kept repeating how they were so sorry !
I couldn't hold back the tears, we were nicely being told the fight was over.
But we weren't ready for it to be over...ever.
Brett was eventually moved to ICU quickly after having a frantic CT scan.
Brett was barely conscious.
I kept having to recite the same information, "Yes, he was fine earlier, he's got ill so quick I just don't understand, no he's had no temperatures, no he was definitely well this morning"
In ICU the situation rapidly worsened. Brett was not stabilising and his blood pressure kept falling lower and lower. The doctors desperately kept trying more and more drugs to keep his blood pressure up.
An intensive care consultant warned us that Brett would need ventilating as his condition was so serious, then he added that they did not expect Brett to last the night and we should prepare ourselves for the worse.
That was the point that I decided Brett was not going to die and he would make it. I felt so angry, how dare some doctor tell me that !
Kev valued the consultants honesty - I thought the consultant was a fool and didn't know what my son was capable of.
I said that I had no intention of grieving for my son until the time that he took his last breath.
The consultant added that if Brett made it to morning he may have a chance but it was extremely doubtful.
That was enough for me.
I told Kev that although he finds my positive/energy healing beliefs a load of rubbish, would he please humour me for one night and send Brett as much energy as he could and would he just keeping telling Brett in his mind, he was going to be ok?
Kev agreed to do it for me. He probably thought I was a crazy desperate mum, he was right, of course.
We sat all night in the ICU room quietly willing Brett to live and after what seemed like years, I finally saw the dawn peep through the tiny window in his room.
Game on, I thought.
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