Thursday, 4 June 2015

Visit to GOSH 04.06.15

As soon as Martha's appointment is over we always head over to the Lagoon for a Panad, Mark starts typing out a group text which he then sends on to me and Mam so we can edit it how we like to send to our groups - and Mark sends his message to his group.

Today the responses had two extremes, some were devastated for us and others were delighted for us.

We had already accepted the fact that Martha Grace needs further surgery, as far as we were concerned today we were going to find out how soon that it's likely to take place.

Martha Grace was hysterical from the moment we had to undress her to have her obs done; she wouldn't sit on the weighing chair and kept launching herself at Mark (9.1Kg), she kept trying to take the Sats probe off her big toe (97% - 100%) and she was inconsolable when the blood pressure cuff tightened it's grip around her leg (map of 87 - which is not accurate, but would be elevated because of the state she had gotten herself in to)

We were dreading the ECHO because of how upset she was already, she put up a good fight and was
forcefully pushing the technician's hand away as soon as the probe touched her chest. But I lay her on my chest and my mam handed me her phone, we went through all the pictures in her camera album and she remained quite calm after that, happy seeing pictures of herself and other family members.

Dr Sullivan wasn't there again today so we were seen by his Registrar (I don't remember her name) who informed us that the Velocity at which the blood passes through her Aortic Valve has increased from 4.5 metres per second in March to 5.1 metres per second yesterday - which is a significant increase. This is a good indicator that there has been progression in thickening of the membrane in the Left Ventricular Outflow Tract. She is going to asses the images with Dr Sullivan when he returns but said that we have now reached the time when we need to discuss surgery to re-sect the thickened muscle.

The only way to do this is Open Heart Surgery.

Martha isn't in any immediate danger, she isn't in Heart Failure, she doesn't have Pulmonary Hypertension and she is clinically really well. But if we don't get her the treatment, eventually the muscle in left side of her heart will become rigid from pumping blood through the obstruction in the subaortic valve and will eventually weaken - leaving her in heart failure.

So we left today with a letter to return in three months time, but Dr Sullivan may well call us in sooner and decide that today's images are enough to warrant Open Heart Surgery over the summer.

Of course we are gutted that once again our Daughter has to endure surgery; but looking at the bigger picture - we are so grateful that a) something can be done and b) we are treated by a Hospital who are willing to perform the surgery. I know that every day there are parents in Hospitals all around the world who are told that there is nothing more that can be done to help their child - and would sell their soul to the devil to have a surgeon give them a chance at surgery.

So, we're back to full on memory making mode...this weather better sort itself out.

GM
x

ps. Thank you everyone who have messaged me privately today - you guys are the best.