Wednesday, 22 October 2014

A letter from London

Tonight we are finally back online; the telephone pole outside our house was hit by lightning almost 2 weeks ago which fried our Router and our ADSL filter - it's taken until today to get someone out here. There are a couple of posts I've been meaning to publish but as I always email photos from my camera to myself - I couldn't do that without out WiFi.

So our last trip to Great Ormond Street Hospital was on the 11th of September, it was Dr Ian Sullivan himself who we saw this time. I've got to say though; although we owe Martha's life to him - I don't like seeing him in the Cardiology Clinic. It might sound completely crazy but he is so "proper" that he isn't enthusiastic enough for me compared to Georgi who we saw last time (you can read the post from our June visit to London here)

While we were offline our review letter arrived so I thought I'd share this one like I did the last time. I'm sorry if you think this is inappropriate but please respect that I do this to support parents who are desperate
for any kind of information to help them prepare for their child's treatment.

So the letter starts;

RE: Martha Redfern-Murphy

Diagnoses:
1. Prenatal diagnosis interruption of aortic arch distal to left carotid artery, large malaligned outlet muscular VSD, subaortic stenosis.
2. Aortic arch repair with left subclavian flap and pulmonary homograft reconstruction, and banding of pulmonary trunk August 2013.
3. Patch closure of VSD, de-banding of pulmonary artery, and resection of left ventricular outflow tract obstruction, 14th November 2013.
4. Intention of epicardial dual chamber pacemaker, 25th November 2013 (bipolar atrial and ventricular pacing leads attached to left atrium and posterior wall of left ventricle via left thoracotomy, connected to generator in suprarenal pocket).
5. Closure of residual VSD, direct closure of patent form and ovale, relief of supravalvar aortic stenosis with patch augmentation, 12th December 2013.

I was please to see Martha, and especially to see her looking so well. She rolls and commando crawls but is not yet standing. She looked well (7.5Kg, 71.2cm). The femoral pulses were easily palpable. The cardiac impulse was not overactive. I could not feel a suprasternal thrill. There was an ejection systolic murmur at the left sternal edge.

ECHO showed satisfactory biventricular function. There was a synchronous contraction of septum and left ventricular posterior wall (LVIDD 27mm, fractional shortening 26%). There was mild symmetrical left ventricular hypertrophy. There was subaortic narrowing, with flow acceleration up to peak velocity 3.7 m/sec. The aortic valve function was good. There was good relief of the previous supravalvar aortic stenosis. Widely patent aortic arch. No residual VSD was seen. Physiological tricuspid regurgitation had peak velocity that was not more than 3 m/sec. Flow in the reconstructed pulmonary artery was not obstructed.

Progress is satisfactory. I suggested she could discontinue Furosemide and Amiloride, and wean off Amiodarone over the next month, which would leave her on no drug treatment. ECG monitoring for 24 hours after her last visit showed either sinus rhythm or atrial paced rhythm throughout with no suggestion of tachycardia. We arranged elective cardiology review and pacing check in six months which the family prefer to continue here despite the distance involved.

***

Although we are happy with the contents of the letter, the tone is completely different to Georgi's letter in June. But if I could go back in time to December 2013 and show myself this letter - I'd be dancing around her bedspace, deliriously happy for sure.

Martha was weighed yesterday and is now 8.06Kg which takes her to 17lbs 13oz - amazing considering when she can home last September she was a tiny 5lbs 13oz.

Here are some photos I've taken of her recently.

GM
x







The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx