Mon 17 June 2013
A visit with Little S to GOSH – we hadn’t been for 7 weeks
and this was our first visit since last October to the ‘standard’ clinic rather
than the day patients ward.
Well, as part of all the building improvements going on in
the hospital since we were last there, the clinic had moved to where the old
day ward was and so there was plenty of space and toys and tellies (for the
obligatory beebies!) – a much better experience all round.
When we arrived, Little S came out with ‘love hopital’, so
that felt like a good omen and, in the weeks before, she’d been started saying
‘Dr D pleased’ when she takes her meds!
She had all her tests: height (85 cm), weight (11.6 kg),
blood pressure (68 / 40), sats (72%), blood test and echo and was great
throughout.
Her weight puts her just below the 50th
percentile for her age, which is better than we thought she might be – room for
improvement but at least she seems to be getting a fair amount of the calories
that she needs.
Her sats were taken by Dr D after Little S had toddled
across the ward from his office to the sats machine – normally we’d expect them
to be a bit low after some ‘exercise’ but 72% is the highest I’ve seen her for
a while (Dr D got 95% and I then bested him with 96%!)
For the blood test we were initially told to go to the next
door hospital which would have been a right pain and probably taken hours. Then
Dr D suggested that we pop down to Walrus (the day ward), phoning to check that
they weren’t too busy. So we wandered down and found two of the nurses J and R
waiting for us with open arms and massive smiles, well waiting for Little S
really: they were so excited to see her again!
Little S got the red carpet treatment with nurses fussing
over her and we were so pleased that we hadn’t gone elsewhere for the blood
test!
We had a good chat with Dr D – he’s very pleased with how
Little S is doing in terms of her outward demeanour, behaviour and mobility.
He talked about her being able to fly at some point (probably
next year now - in a plane - she doesn't actually have super powers) which he seemed to rule out before – apparently there’s a room
in GOSH where they can test a child’s reaction to aircraft cabin pressures for
an hour or two.
He also suggested that we probably didn’t really need to
take oxygen machines and large oxygen tanks with us on holiday over the summer.
So lots of good stuff.
But Little S’s heart seems to be just as weak as it was back
in January – all of her improvements are symptomatic and, presumably, down to
her medication, her miraculous tenacity and the positive, normal atmosphere
that we encourage around her.
Dr D used her echo scan pictures to show us the part of her
heart wall that is affected by heart failure – whilst it should be moving
almost a third of the way across the heart chamber and back as part of each
heartbeat, Little S’s was still not really moving much at all.
So the good news is the Little S looks like she’s doing
really well and is in really good spirits and on course to actually start
nursery in September! Who would have ever thought that that was possible –
she’s already been along for a couple of hours to check out the toys and seemed
to have had a good fun time. The teachers seemed pretty clued in to her needs
so we’ll give it a go.
The bad news is that there is no change inside. Dr D also
felt that there was no point doing a speculative procedure, like an angiogram,
to look in more detail at her coronary arteries (they might be the cause of
all her troubles – and world expert, Dr H at Stanford seemed to think that an investigation might
yield some useful information) as she’s doing fine right now and a procedure
could put all of that at risk.
So it’s just try and keep up the good work until our next
appointment in August.
