Thursday, 5 June 2014

Happy Dance

I still can't quite believe I'm typing this post. This time last night I was running through worst and best case scenarios in my head trying to work out how we would respond/react to each situation.

I didn't dare dream that we would get the results that we did at Martha Grace's Cardiac Review appointment today.

We were a little bit lost when we got to Great Ormond Street, it's been so long since we've been there and they've finished the renovations to the VCB and the entrance that we'd used throughout Martha's admission was completely blocked off as they continue with renovations there. We were called through shortly after arriving in the waiting room, Martha was weighed and measured first (weight 6.22Kg, height 67.4cm) and then it was time for the ECHO.
If you've read any of my previous posts you will know that I can't
be present when Martha has an ECHO anymore, not since we spent 3hrs waiting for a Consultant to ECHO her the day after Operation number two in November. Mark and my Mam went in with her, I went to the Lagoon to heat up Martha's bottle - they still weren't finished when I got back so I made myself scarce again and went in search of a toilet. I could hear her crying when I arrived back - I wanted to go in to check that she was OK, but I know she just hates it when they position the probe to get a view of her Aortic Arch and that's why she was screaming.

Soon it was all over and we had to wait for the Consultant to review the images before he could discuss them with us. Today we met with Georgie - anyone who's ever met him will know he is a hell of a character, so enthusiastic and over the top.

I can't remember word for word for word what he said, which is so not like me - but our meeting covered these points:-

  • The residual VSD's are no longer significant and they can't see jets of blood shunting through any more
  • She doesn't have Pulmonary Hypertension
  • The Right Ventricular Hypertrophy is reducing, though it will take years to completely disappear
  • She has good systolic function
  • The Subaortic Stenosis is only mild
  • The Regurgitation in her Mitral and Tricuspid Valves are only mild
  • The narrowing in her Aorta which was patched in December looks great
  • Her Aortic Arch which was repaired in August looks perfect
  • She doesn't have any Heart Failure
  • Her Liver is less than 1cm (it was 2cm in February)
  • The doses of her diuretics have been reduced as the atrial dilation is reducing
They were really impressed with Martha, the way she looked and how well she had improved - Georgie said he had to double check she was the right baby to match the images as he could remember how sick she had been, but in his own words "She is very VERY fine!!!" He even suggested we take her on holiday to Spain or Portugal this year. I wanted to break out in to a Happy Dance along the Hospital corridors.

Next was the Pacemaker Clinic, where it showed that Martha's Pacemaker is using more energy (battery) to pace her heart - it's increased over time. We don't know why, but they are thinking maybe the amiodarone which is slowing her heart rate/rhythm down may have something to do with it. They will check it again in three months time to see if there's any change. At the moment she has a longevity of 5 years with her current battery, but if her pacemaker is using more energy then she will need it replacing sooner. She's been sent home with a Holter which will record an ECG for 24hrs - we're to send it back and they'll review the results. Hopefully we can get rid of the amiodarone.

So that was it...we are free for the next three months. We can enjoy the summer. The next job now is to organise Martha's 1st Birthday Party - it's amazing! This time last year we couldn't be sure she's survive birth and her 1st operation, let alone 3 open hearts.

Thank you all for your support. Thank you for everything.

GM
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