Thursday 21 May 2015
We have a community nurse come over every couple of weeks to
check Little S’s sats and make sure that she’s generally looking ok.
Last week Little S got 87%!
87%! I don’t remember her ever getting 87% before.
Most people would panic if their sats went below about 95%
but during her bad spell in GOSH Little S went below 60% more than once, which was terrifying.
Before the procedure in November she was hovering at just
over 70% and since the procedure has been more like 79/80%.
So 87% is amazing!
Now I don’t for a minute expect her to get 87% again any
time soon but it is one of a number of indicators over the past couple of
months that seem to show Little S is continuing to build up more resilience and
strength rather than, as I had feared, getting weaker with every passing month.
For one thing we’ve now given back two of the three oxygen
machines that we had in our lounge for the previous 28 months, along with two
of the large oxygen canisters that were in our garage.
It’s taken a long time to get to this point – and it’s only
partly because we were worried that Little S might still need them: the process
of getting oxygen machines removed is very, very strict (or cumbersome,
depending on your point of view).
I can understand why – we get the machines from a private company and they want to make sure that every possible liability is removed before they make any changes to the ‘prescribed’ set of equipment that they provide and service.
When you combine that with the fact that there doesn’t seem to be any standard way of writing an oxygen ‘prescription’ and it ends up being quite difficult to convince the company that their machines are better off with them than us.
The reason that we had three machines in the first place was that Little S was a baby when we got them and wouldn’t countenance putting on an oxygen mask so we had to treble the power of the oxygen and waft it around her room in the hope that that had some sort of effect.
But we’ve still got one machine just in case – the hope is that if she ever needs to she would use a cannula to gently blow oxygen into her nose.
Until then it will gather dust in our lounge and the kind folk from the oxygen company will come and check that it works every few months.
Just in case.
We’re also now only going to check-ups at GOSH every four
months (plus occasional visits to top up with her meds).
Little S is also generally a bit more active.
That was certainly true over Pesach where she was staying up
really late, singing away with everyone and bossing everyone around.
And at her fourth birthday party and J’s fortieth she was
boogieing away on the dance floor, although admittedly at J’s party she was
asleep before the real dancing got going.
Then at her nursery, she was in a dance show – dancing to
For The First Time in Forever from Frozen and giving as good as any of the other kids there – I went
along to watch and it astounded me to see her joining in: bending down, moving
around – to see her behaving just like everyone else was wonderful - I was so
proud and amazed and very close to tears.
Earlier this year we were asked by the local children’s
hospice if we could remove Little S from their list – she’d been on their books
for as long as we’d had the oxygen machines.
So we said yes – we hadn’t used any of their services (which
don’t just revolve around end-of-life care but include respite for parents and
siblings) and every time they called we would tell them that “she’s doing fine
at the moment – let’s speak again in a couple of months”.
Little Miss Stubborn
So all of this sounds really positive – and it is – Little S
is genuinely doing very well.
She’s growing up, developing into an beautiful and articulate
and extremely stubborn little girl.
And thank god for her stubbornness!
Whenever she says ‘NO!’ or argues or shouts or screams I try
and remember that it’s probably a personality manifestation of the same part of
her that is fighting every minute, every hour and every day to stay well; to pump
enough oxygen around herself to enable her to do everything that everyone else
does, because why should she miss out? to refuse to give in; to never give up.
To me, the fact that being stubborn is so much part of her personality
indicates that it’s also deeply ingrained in the way her physical self works
and reacts.
I’m fairly sure that this stubborn streak is inherited – we’re
blessed with a long line of strong women in our family: my sister, my Mum, my
Nana and back further into the Vigons (that’s their family name, not the name
an alien race that we’re all descended from!)
Stay stubborn Little S!
What next?
The next stage is going to be another procedure to further
widen her pulmonary arteries and let more oxygen flow between her heart and
lungs, which should improve her wellbeing further over the next year or two.
Given that she’s gone through a catheterisation once since she had heart failure, and it went relatively well, the risks should
be lower to do it again as we know she is pretty resilient.
We’re currently waiting for a date for that procedure.
Alongside that I’m still waiting for Dr B in Petach Tivka,
Israel to ask Dr R in Stanford, California (he’s the more friendly colleague of
Dr H in Stanford, California that Dr B knows) for his thoughts on the results
of the November cath. But Dr B is waiting for Dr D in London, England to provide
him with some extra data without which he doesn’t think Dr B can really help.
And I’m trying to chivvy them all along without appearing to be too much of a
pain!
