Wednesday, 9 July 2014

Best letter ever


I've been wanting to type and publish this post since the end of last week but I just haven't had the time. On Friday morning a lovely letter landed on our doorstep. We are always cc'd in to letters that Great Ormond Street Hospital send our GP following an appointment. If you read the post I published when we got home from London at the beginning of June you'll know that in all the excitement I didn't remember word for word
everything we were told that day, which is not like me at all.

As I want this blog to serve as a record for Martha of her journey I thought I'd fill in the bits I missed in the "Happy Dance" post.

The letter is from Dr Georgi Christov, I'm not going to re-type the whole letter as it's too long and to be honest I'm not 100% sure if that's even legal - but I'll pick out bits that I think is important or interesting for other Heart Parents.

It's starts off with " I was delighted to see this patient in Dr Sullivan's Outpatient Cardiology Clinic. We know her very well from her long-term stay with us following the repair in November last year." Now this made me laugh.

He say's that "On examination, height 67.4cm, weight 6.22Kg, heart rate 105/min, oxygen saturations 100%. She is looking perfect and she is normally developed. There is no heart failure. Respirations are symmetric and normal. Liver is palpable at 0.5cm below the right costal margin. Spleen not palpable. There is no peripheral oedema. Heart rate is with regular beats. Heart sounds are normal. There is systolic murmur grade 3/6 but there is no precordial or suprasternal thrill. There is normal pulse on the right radial artery. I did not attempt palpation on the femoral ateries."

"Echocardiography was performed by ****** ****. It confirmed excellent outcome. There is mild subaortic stenosis with acceleration not exceeding 3m/sec. The residual supravalvar aortic stenosis is minimal if any. The aortic repair is excellent without any coarctation. There is no stenosis at the site of the previous pulmonary artery banding. Pulmonary artery branches are normal. There is mild tricuspid regurgitation with velocity varying between 2.8 and 3.1m/sec confirming near normal pressures in the right ventricle. The residual ventricular septal defect is minimal and the measure velocity of 3.3m/sec must be an under estimate of the expected higher velocity as there is no suspicion of pulmonary hypertension. The right ventricular hypertrophy is decreased and so has the left ventricular hypertrophy. There is a small patent foramen ovale with minimal bidirectional flow across it."

The next paragraph now is my favourite. "In conclusion, this is excellent outcome after complicated postoperative period without current significant findings. There is no residual supravalvar aortic stenosis. The subaortic stenosis is mild. Ventricular hypertrophy and diastolic function is less pronounced but still present. There is no pulmonary hypertension and the residual ventricular septal defect is minimal without significance."

Of the pacemaker "Pacemaker showed good function of the battery and the leads with some initial increase of the ventricular lead threshold requiring higher output voltage suggestive of some initial fibrosis at the insertion site."

So I ended up typing more that I had planned. But for anyone about to embark on a similar journey with their child, this is the level of detail you should expect to receive about your appointment. I know it's a lot of medical jargon; but heaven forbid you should spend as long as we did in Intensive Care - you will be able to understand at least 90% without needing a Dr to translate for you.

Today is also a significant day for us. Tuesday 9th July 2013 I was 32 weeks pregnant with Martha Grace and we went to visit the team at Great Ormond Street and UCLH for the last time; to discuss her treatment, to have a tour of Flamingo and Bear Ward and to arrange my induction date. On that day we had no idea what lay ahead for us. I would never have let myself believe I'd get a letter like this one in the post a year later. But if all Martha needed was time, if she really needed to put us all through hell for 10 weeks - it was totally worth it to have a letter like this in the post.





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