Friday, 10 January 2014

Nerves

Ds3 goes to Alder Hey next week.  We have an appointment every six months and he's been going since he was five months old.  You'd think I'd be used to it by now, but every time the appointment rolls around I find myself a complete ball of nerves.

Some people will say this is normal, I'm his mother and of course I should worry but, having already had one child with a heart condition, I think I should perhaps be a bit more used to things by now. I'm just not.

Ds3's condition, Aortic Stenosis, diagnosed after he was born, is not really as major as his brother's condition.  In fact, when we first found out about it his consultant said that it would just be a case of following him along as he grew, checking to make sure his heart was working OK.  When we went for his first appointment however, we were told things were more serious than that.  Ds3 needed a Balloon Catheter immediately to stretch the valve in his heart which was too narrow.  I was crushed.  The memories of ds1's surgery came flooding back, the thought of having another child with a scar down his chest was unbearable to me.  He seemed so well and didn't look as ill as his brother had done 9 years before.  It was the last thing I had expected.

The Balloon Catheter procedure is actually much less invasive than open heart surgery and there are no wounds or scars, just a plaster to cover the puncture wound, still I worried about everything, the stay in hospital, the anaesthetic, what if something went wrong?

Ds3 looking well, but he wasn't


On the day of his procedure I took him down to the catheter lab and watched as the anaesthetist put him under.  A nervous few hours passed where we paced the hospital grounds with dd2 in a sling, waiting until we could see him again.  When we went back up to the ward I was allowed to go and fetch him from the recovery room.  I could hear him before I could even see him!  Having been starved of milk for a good few hours he was wailing with hunger.  I carried him back down the long corridor to the ward where he was allowed some milk.  He drank so quickly, barely pausing for breath and then fell fast asleep.  His procedure had gone well.  A scan confirmed that the valve had been stretched almost back to normal. We were happy and relieved.  We went home the following day.

Maybe because it's the same time of year, almost exactly four years to the day, but I'm extra nervous about this appointment.  Every time we've been back to see the consultant he's been very pleased with ds3's heart function.  Every time I've walked away wanting to punch the air in happiness - another six month reprieve!  It is always a little bitter-sweet however, and that's the hardest part for all of us, the not knowing.  Our consultant is always reminding us that ds3 might just need another balloon catheter one day.  He just can't predict which day that will be.


Mad Mum of 7 - Living It Large

3 comments:

  1. I'm so glad it went well but understand your worry -hope your gorgeous little boy continues to thrive. Thanks for linking up with #tired&exhausted

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    1. Thanks Afra, it was a pleasure to link up!

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