Hey ladies - glad to see everyone is doing well. We are back on track, as Stork says, we did have a few set backs, and our world turned upside down a few times! But we are here, and Archie is doing so well that he's busy crawling from one end of the room to the other at 9.20 pm, with no signs of bedtime being close!
In short, op was supposedly a success, then he went into JET in theatre (heart rate racing to uncontrolable levels) and had to be put into a controlled coma, they tried to bring him out of it, but had to put him back to being paralysed, chilled and sedated. We were warned that there was no treatment for this, and that it was just the machines keeping him alive. They tried again after 5 days and although this problem had solved itself it showed a new problem. This was complete heart block and he needed a pacemaker to keep him alive. They scheduled him for another op to have one fitted permanently, but at the last minute his own heart started to do its thing. We were delighted, but our happiness was blighted by word that some neurologists were coming to do an assessment on Archie as they thought he might have brain damage from the op. it had been 5 days since he came off sedation, and he still lay still with a blank expression - there was no hint of our Archie until 10 days after the op, and I was petrified. It was like we had a newborn back, and he was learning everything from scratch... I could follow his progress day by day - by the end of day 6 post ICU he was the equivalent of a 4 month old. We went through all the stages again - trying to get neck control, discovering his hands, hand to eye coordination, sitting unsteadily, sitting sturdy, head butting the floor trying to crawl. He's now on the move and trying to pull himself up all the time. They put it down to exhaustion... I saw an element of the animal instinct to 'play dead' - he was terrified, and rightfully so.
It has been the hardest experience ever and I am so glad it is over. When I say over, we do have another appointment on 10 April - and I am nervous about what they will tell us. They left residual holes and a leaking valve, and they didn't touch the valve that was supposed to be one of the reasons for the op. I am petrified they make us go through this again.
One important thing that came out of this experience is that they did DNA tests, and it turns out it is not Mr W and I who caused this, and there is no reason for us to think brothers/sisters may be affected... So I am back to charting cycle days, etc. onwards and upwards!