Monday, 15 September 2014

London 11.09.2014



I have been wanting to put this post together all weekend, a few of you have messaged to find out everything was OK as I hadn't really updated you all properly (thank you to those who did). But I'd worked a late shift the night before we went to London, we had a nightmare journey home and Mark went away for the weekend - I just haven't gotten around to it until now.

I don't think I will ever stop being nervous before an appointment at Great Ormond Street, regardless of how well Martha looks to us - we never really know what's going on inside
with her heart. We'd had such an amazing appointment in June so this time we had really high expectations and anything less than the news we had three months ago would have been worrying for me.

I start feeling physically sick at the same place every time; we turn off Southampton Row by the HSBC, cut across just before Russel Square tube station and approach "The Horse Hospital" and BOOM - my stomach is in Knott's. I think it's because when we walked back to Hospital after seeing Mark and the Kids to the train station I'd start worrying about what Martha Grace would have been doing at Great Ormond Street during our brief absence.

Our appointment was for 11:10am, after a short wait we were called through so Martha could be weighed (7.5Kg) and  measured (71.5cm) They took her blood pressure (though I can't remember what it was) and measured her Oxygen Saturation levels which was 98% - anything above 92% is acceptable for Martha Grace.

We were then led to another waiting room for Martha to have her ECHO. I still can't take Martha in; the consultant asked if I was staying and I really wanted to say yes but I just can't sit there while they focus the probe on a particular area for ages and talk amongst each other saying words I don't know. I took off to the Lagoon to heat up Martha Grace's bottle ready for her lunch time feed. The bottle warmer took ages to heat the silicone bottles we use and by the time I got back the ECHO was finished.

We were seen by a Registrar called Georgie back in June, on Thursday we met Dr Ian Sullivan again - he is Martha's lead Cardiologist. He is a man of few words and didn't go in to as much detail as we had three months ago, but here is a summary of what was discussed. 
  • Her Heart Function is good
  • The Aortic Arch repair (August 2013) looks really good
  • The patch on her Aorta which was widened in December looks good
  • She still has some narrowing below the Aortic Valve - but they just want to monitor this. They hope it will grow as Martha grows; if it doesn't then they will have to operate but as she is bigger now there would be more room to trim away the muscle.
  • He told us we can stop giving Martha Amilloride and Furosemide (diuretics)
  • We are to half her dose of Amiodarone (slowed down her heart rate) for a month and then if we're happy with her - she can come off it completely 


But the most amazing part of all is that they are Happy enough with her that she doesn't need to be seen for 6 months now - we have never gone for that long without an appointment. Any Heart Parent would agree that this is a huge achievement (though the ultimate goal is to only need to be seen annually)

I hope that when the letter comes through the post that there is a lot more detail that I can share with you.

Next up was a visit to the Pacemaker clinic where we saw Sophia who is an EP (Electrical Physiologist) Sophia is a fellow Welshy and we met her quite a few times during Martha's admission. She connected Martha's Pacemaker to her device and it pulls up all the Data that the Pacemaker has been recording. There was a list of all the episodes of high heart rates (above 180bpm) which were all either 5pm or 8pm - Martha's typical whinge and moan time of day. Sophia didn't say much only that it all looked good, the Battery for the Pacemaker has an estimated longevity of 4 years.

While we were waiting for Martha to be seen a Mum arrived in the waiting room and her son had a Tracheostomy. Martha was so close to needing one but it really did seem like the end of the world for us at the time. However this Mum seemed so happy, she was talking to her little boy in his pram the same way I talk to Martha, she didn't seem phased when she had to suction his tubes 4 or 5 times. But I guess she still has her baby; and Owyn, Eva and Cooper's parents would probably give anything to trade places. It's such a humbling experience being at Great Ormond Street.

Thank you all for your continued support - I'm so glad we had some happy news to share with you.

GM
x

PS. Mark won't let me put up the Christmas trimmings or play Christmas CD's - he says September is far too early :(

This day last year we'd just gotten Martha Grace home for the first time and she was just settling in.


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