Visit to GOSH || 12.03.15

I thought this post would be a really long one; I thought I'd talk about how we kept Martha entertained on the train, how we she screamed her way through her ECHO...I'd even share how scared we were when the Electrical Physiologist couldn't connect the machine to Martha's pacemaker and how we thought we'd be there at GOSH over the weekend while she got a new one put in (that's a story for another day)

A lot of you have been messaging me on Facebook and Twitter since I posted that we didn't get good news today; so I thought it's only fair to update you all.

The sub-aortic stenosis (narrowing below Martha's aortic valve) has become more severe since September; back then it was measuring at a velocity of 3 meters per second (the speed of the blood flowing through the narrowing) but today it measured well above 4.5 meters per second. There is also supra-aortic stenosis (narrowing in the ascending aorta, as it leaves the heart) - this is where they went in to repair during open
heart surgery number 3 in December 2013.

We always knew there was a high possibility of re-intervention; we just didn't think it would be so soon. Unfortunately it's a common problem in patients where there was an Interruption in the aortic arch, fibrous tissue can grow in the aorta.

We saw Dr Sullivan's registrar today, he says it's highly unlikely that he will see Dr Sullivan before Martha's letter absolutely has to go out next Thursday. But Georgie is happy that we should change Martha back to 3 monthly appointments and see where we are up to when we bring her back in June. Although he thinks surgery needs to be done within the next year, he isn't even going to present Martha's case in a cardiology review meeting yet. But if Dr Sullivan decides that it needs to be done before her next appointment in June he will be in touch. She may even need a CT scan so that the surgeons and cardiologists can have a better idea of her anatomy and it might show different results to what they can see by looking on a screen during an ECHO. But we know that once things like this start progressing they only get worse and become a much more difficult case - the trick is to time surgery when it's best for Martha (when she's strong enough to cope) and before the stenosis reaches the point where nothing can be done.

So that's what happened today; after such good appointments this year we are absolutely devastated to be facing this right now - especially after what Martha went through during her last admission.

But clinically speaking, he was very happy with how well Martha was in herself and how she looked today; he said she looked amazing. To be honest, that doesn't really mean anything when she has a ticking time-bomb inside.


Little Hearts Big Love

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