The big closure

Trip Start Nov 21, 2006
1
6
Trip End Ongoing


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Sunday, March 2, 2008

It seemed such a long time since Amy came into our lives.  We've slept (if you can call it sleep anymore?) 464 times since she was born.  Most of them fitful, the odd one tranquil and I've actually woken up earlier than Amy on two occasions.  Our good friends Matt and Immy have just brought Ruben into the world, and when we caught up with them a couple of weeks before he was born Matt asked about sleep a couple of times.  "How often do you get a lie in" he asked.  My response of "what do you mean by a lie in? 7am?" wasn't well received.  He shouldn't be unduly concerned as he's looked old and haggared in the 14 years I've known him....

The last couple of weeks have been probably the hardest of my life.  Amy was due to go to Birmingham's wonderful Children's Hospital on 11 February for an operation to close the hole in her heart - we booked her in for this appointment back in November much like we were booking a stay at a hotel - all very organised we thought.  However, having geared ourselves up for this, we received a call the day before to tell us that there was a backlog in surgery, so she wouldn't be going in.  We would instead be on the emergency list and be called up at the last minute.  The call came on Wednesday 20 February at about 10:30am - and we had to be in by 3:00pm.  So, I finished the email I was sending, sent a message that I would be out for a week or two and headed off home in a daze.

We tried to be as normal as possible, gave Amy her lunch, then it was time to go.  Everything was a bit of a blur, as we rushed about getting x-rays, ecgs and echo scans done.  We double-checked that Amy needed the op - she looked perfectly well and healthy, we saw the surgeon and he told us all the risks of the surgery.  The most stark was the 4% chance of death.  That's a 1 in 25 chance that our daughter - the most important person in our lives - wouldn't get through the operation.  There was also a risk of brain damage, plus other risks associated with open heart surgery.  This is the third consent form I've had to sign for Amy and the hardest to do.  Once again we wouldn't be able to protect the person we brought into the world and somebody we'd only met a few times would be doing this for us.

The walk to the operating theatre was again horrible.  We sobbed as we carried her down the corridor and held her hand as she was slowly anaesthetised.  For the next 6 hours there would be absolutely nothing that we could do.

What do you do for 6 hours when you are absolutely terrified, but have nowhere to go?  I can't remember what we did.  We probably walked round the centre of Birmingham and had inane conversation.  Prior to the operation I'd convinced myself that if something were to go wrong then I'd feel it.  I waited for some twinge of pain, but none came.  This didn't help and just made the prolonged wait even harder.

After 6 and a half hours of surgery we were told that she'd been moved to intensive care and was stable.  We went in to see her and sat with her for a few hours as she lay motionless,but apparently doing well.  Wires were again attached to her, and she was on a ventilator.  Her heart had swollen during the operation, so they were unable to close her rib cage - she therefore donned a sticker with 'CHEST OPEN' in bright red letters on her torso.  I won't go on about intensive care, but it is exceptionally draining.

Once again we were fortunate that we only had to be there for 2 days, as she recovered faster than average.  Back on the ward she was desperate for food, and gulped down milk like she'd ever eaten before.  After one day on the High Dependency Unit she was back on the ward, and recovered wonderfully save for a chest infection that she's still trying to shake off.  On Wednesday 28 February we were discharged, and all signs are that the operation was a success.  The large hole in her heart has been closed and the surgeons also identified a tiny hole in one of her heart valves, which they closed also.

I'll try and put this in perspective, something I sadly didn't manage to do in words to the surgeon, the excellent Tim Jones, to whom we said "many, many thanks" more than once.  It still isn't enough.  If Amy hadn't had this operation then she would probably have gone into heart failure at about the age of 8 or 9.  Tim Jones and his colleagues have therefore probably given Amy 50 or 60 years of life that she wouldn't otherwise have had.



Thanks to all of you who put us up (Rich & Ranj, our tremendously supportive parents), those of you who sent cards and pressies, and those of you who just spent a second thinking about us and wishing Amy all the best.  She's still on the mend now - her chest is still sore and the scar will take a month or so to properly heal, but the sense of relief we've felt has been palpable.  Coventry City's win over Spurs on the last day of the 96/97 season doesn't even come close.....
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