A lot of drugs, but they're working

Wednesday 6 Feb

Little S started on another drug - this one is a beta-blocker and the last of the bundle of medicines normally given treat heart failure - it's the one we've been building up to but probably won't have much effect until the dosage increased.

First time though and Little S had no bad side effects, so we were allowed to go home again!

Before we left, we talked to Dr D a bit more about Japanese Dr S. Dr D feels that this pioneering work will eventually become routine and will replace a lot of heart transplants, but that's not going to happen for at least 5 - 10 years. The procedure involves taking some stem cells from a healthy part of the heart and introducing them to the failing part of the heart - and 6, 9, 12 months later Dr S finds significant improvements in heart function from the half dozen kids that he has treated so far.

So we're going to ask Dr S for his opinion about Little S - her condition may mean that she is not suitable or that he is not allowed to treat her for ethical or legal reasons - maybe she has to be Japanese! And anyway, even if she was suitable and allowed there are so many hurdles, not least that we would have to get her to Japan when Dr D has told us that long-haul flying is not a good idea at the moment!

But there is no harm in asking ;-)

And then there is the question of whether we would want the operation done anyway given the risks involved in major surgery - it obviously depends on the risks in not doing it. And on whether there are any other alternatives: at the moment it's just the drugs. But the drugs are working.

So how do you weigh up drugs versus high-risk potentially life saving procedure? You dodge the question and take the pragmatic route for the moment of just trying to find out more.
Thursday 14 Feb

It was Dr F today as Dr D was away.

This turned out to be a good thing - Dr F provides an extra perspective that feels a bit more positive than Dr D is sometimes. Maybe it's because Dr F wasn't the one that had to look doom in the face and give us the worst possible prognosis back in December. In any case he seems pleased with Little S - he hadn't seen her for a few weeks and so noticed a big improvement.

He also let us know that he has seen a number of infants and small children suffer from heart failure (although not necessarily with Little S's extra complications as well), have the same course of medication as Little S and, over two or three years, actually recover heart function - little kids are so amazing that they can even get their heart working again, given a bit of medicinal help (no, not whiskey!).

Thursday 21 Feb

J went without me today - a good sign, both because it means that we have more confidence in Little S going to hospital without needing the comfort of both her parents there (admittedly this was a simple check-up rather any blood tests or scans) and it also means that J felt more confident about getting there and back again in the car!

Thursday 28 Feb

Little S has had a cold for the past few days.

Given that it was probably a winter bug virus that brought her down and triggered all of the problems she had in December, getting another bug has been a bit of worry over the past month or two.

But then when it happens, you just have to deal with it - and it turns out that there hasn't been a great deal to deal with - it's just a cold, like any other toddler's cold.

So to me this is big news - she seems to have developed enough resilience to fight a cold bug without becoming overly lethargic or starting to lose further heart function.

Little S versus a cold - the poor bug never stood a chance!

Anyway, saw Dr D again today and Little S had both a blood test and an echo scan.

Dr D was pleased - the echo scan showed no deterioration in her heart.
He also said that there has been no improvement in heart function - we took that as a positive comment too - it implies that there must at least be the possibility for improvement!

And he's given us next week off - two whole weeks without hospital - hooray!

In the mean time, we wait to hear from Dr B in Birmingham (UK's top pediatric cardiological surgeon), Dr F in Stanford (world expert on pulmonary atresia) or Dr S in Japan (ground breaking stem cell procedures).

Two months home

Two months ago Little S had just arrived home: one hour before the start of January 2013.

At that point, we didn't know if we'd all make it to March, and we couldn't see past the next day.

Now we are thinking about planning Little S's second birthday at the start of April, and even what we should think about doing over the Summer.

And Little S continues to make good progress - she's now moving around like a toddler should: smiling, laughing, playing and saying 'No!'.

We know that it might change at any time, but for the moment, the medication combined with her stubborn refusal to let anything beat her seems to be doing the trick.