Sunday 09 November 2014
And if you were to ask me
After all that we've been through
Still believe in magic?
Yes, I do
Of course I do
After all that we've been through
Still believe in magic?
Yes, I do
Of course I do
Coldplay, Magic 2014
Nearly twenty three months ago Little S went into hospital undergoing heart failure.
During those dark times we didn't think she was going to make it to her second birthday, and yet through a combination of medication and sheer stubbornness, she is not only surviving but thriving. Magic? It's certainly a kind of magic!
A couple of weeks ago my son J and I went to Israel for a short holiday to see family and friends and Jerusalem and also to meet up with Dr B who I've been in touch with since the dark times and who gave us our first and probably only really useful second opinion so far.
He chatted to me and J for about 25 minutes and then decided he would take us on a tour of the hospital, the Schneider Institute. We saw the incredible facilities there and even met a tiny baby with pulmonary stenosis (narrow pulmonary valve) for whom Dr B was going to do a catheterisation (one hour later) to widen her valve - a similar procedure to what Little S is having on Monday.
He told us that Little S's heart failure wasn't great but it wasn't too bad either and that:
- the cath coming up was really important both as an opportunity to expand her conduit and pulmonary arteries and also as a way of obtaining lots of information about how well or otherwise her arteries have been growing and therefore what opportunities there might be for follow up procedures and surgery.
- he would forward the scan from Monday's catheterisation to the world's best pediatric cardiology surgeons, in Stanford California, (Drs H and R) for their opinion on what might be done next
- he thought there may be a couple of options going forward, although even doing nothing may well be viable for a while
- one possibility is further heart surgery to partially close the hole in her heart with a patch (which means, amazingly, that they would be able to then go in at a later date with a catheterization and fully close the hole - it's like a zip!) and to replace her conduit with a homograph which acts like a proper heart valve.
- the other even riskier option is to start considering a heart-lung transplant.
So hope, but hope reached by a long road full of ifs and buts, risks and dangers.
............
And now it's the day before the catheterisation.
Fear and apprehension fill my thoughts.
It's the right thing to do, of course it is, but the risks are there and they're not negligible.
Prayers have been said, friends and family have offered support.
It will soon be time to leave it up to Dr D's expert hands, Little S's strength of will and whatever help we can get from up above.
Believe in magic? Of course I do
