Tuesday 20 January
2015
Not sure how I forgot to let everyone know but the
catheterisation that we were so worried about back in November, over two months
ago, went really well.
Dr D’s happy – the procedure went as well as he could have
expected.
Little S is happy – she’s got a bit more breath.
We’re happy (although we weren’t happy on the day of the
procedure – more about that in a bit) – Little S is fine and doing more stuff
than she did before the procedure.
And I still believe in magic!
The day itself however was fraught – we were genuinely
worried about what might happen, which wasn’t helped by at least two doctors
going through all of the risks involved in all of their gory detail.
Now I know that that’s part of their job nowadays in the litigious culture that we
live in – I guess that there is also something about being transparent and
ensuring that patients are properly informed in advance of any decision –
but
we’d already made the decision!
and sat through all of the
details on risks!
and they went through all
of this information with Little S sitting on the bed right next to them – not
the sort of thing that you want a three year old to be hearing an hour before
her cath.
Taking Little S down to the cath lab and handing her over to
the doctors was about as horrible and traumatic as we’d expected, we'd done
the same thing a couple of years ago and knew that it was not going to be pleasant.
The nurses did their best, getting Little S a bit drunk on
liquid anaesthetic so that she was pretty dozy by the time we got down from the
ward to the cath lab.
But no one had counted on Little S’s reserves of
strength and sheer stubbornness – as the nurses tried to put on her mask to
send her to sleep, she pushed through her stupor like a wild elephant trying
desperately to escape from the poachers after being hit with three
tranquiliser darts – eventually even Little S went down, but not before
many long seconds where we were trying to reassure her that it will all be
fine and yet wanting to tear her away and take her home to a happier place.
Two long hours passed spent wandering the streets of
Bloomsbury and Russell Square and hanging in Pret trying to eat some lunch,
trying to not ask each other the questions we didn’t want to answer ourselves.
As we were walking back to GOSH, the nurses called but rather
than saying that everything was fine, they simply said that we had to go
straight to the cath lab!
If the preceding two hours were long, the next ten minutes
were interminable.
Hearts ... in ... mouths.
We ... went ... to ... the ... ward.
And ... then ... to ... the ... lab.
Where we were greeted by smiling nurses, a happy Dr D and,
best of all, loud cries of anger and confusion (but not pain) from Little S.
She was fine!
Why the hospital didn’t tell us that as soon as they spoke
to us, god only knows.
Such relief!
We spent the rest of the day on the ward and both J and
Little S stayed overnight, just to keep an eye on her.
But she recovered quickly and by lunchtime the next day we
were on our way home.
And the memories that Little S took with her were of playing with
Lego and ponies and having a sleepover with mummy rather than strange lights, nasty doctors and painful surgery.
Amazingly, after a couple of days at home Little S was back to normal, in fact better than normal as her sats went up from around 73% before the procedure to around 80% afterwards - fantastic!
During the procedure, Dr D was able to get good imaging of her pulmonary arteries and to fit a stent which has widened the conduit that sits where her pulmonary valve should be from just under 5mm to over 7mm. It might not sound like a big deal but that doubles the surface area through which blood can flow between her heart and lungs.
Little S actually seems pinker now, and her nursery teachers say that she has more energy than before the procedure - she's certainly trying to climb stairs a lot more often - so it's all good really!
Dr D also saw that there are one or two other parts of her reconstructed pulmonary arteries that are a bit pinched and suggested that he might be able to widen them with a similar procedure, which could give her even more puff. He's since suggested that this might happen during the spring, in the next few months, and following that, she might be good for months or even a few years.
So the black cloud has receded somewhat and the horizon is clearer than it has been for a while.
Little S is happy - and I believe in magic!
(and in the quite brilliant team at GOSH that stuck a tiny catheter tube into my daughter's heart, located the bit of Gore-Tex conduit that they put there two years ago to make up for the valve she didn't have, expanded a small metal mesh to widen the conduit and increase the blood flow between her heart and lungs and give her a bit more puff, videoed the whole procedure and got out again without any side effects - wow!)
