Emotional roller coaster

Tuesday 20 Dec 2016

This time last week Little S was scheduled to be in the Cardiac Intensive Care Unit (CICU), recovering from open heart surgery that would have provided her with a bigger pulmonary valve and given her more puff, more energy and make her less blue.

Today or tomorrow she would have been scheduled to leave hospital and come home for a 4 or 5 week recovery period.

Instead, on the morning of the day that we were due to go in, GOSH called off the operation because Little S had picked up a cold virus.

She often struggles with a cold at the best of times, so giving her the challenge of recovering from major surgery whilst feeling a bit under the weather? No, I don’t think so. That would not be a good idea.

GOSH knew that she had a virus because they’d tested some snot that, on the previous Friday, they’d sucked out of Little S’s nose!

On that Friday, we spent the best part of the day (did I say ‘best’?) convincing, conniving and cajoling Little S though various tests – bizarrely, she was quite content during the hour and twenty minutes that she spent having an ultrasound (probably due to the well-placed TV above her head showing CBeebies the whole time), the ECG wasn’t too bad, and even taking the bloods was no worse than usual, but she screamed through height, weight, SATs and mouth swabs like they were the start of the actual operation!

Apart from Little S being in the main brilliant for most of the day, I think we also owe a huge debt to the wretchedly addictive iPad app Colour Switch (I’ll make it past Level 4 next time!) for helping us pass the time. 

We would have made it home sooner but we were asked to wait for quite a while for Mr K, the surgeon that was going to do the operation, and the same surgeon that operated on Little S five years ago - he was in surgery for most of the day. 

We felt that it was important that we met him though. Despite the fact that he reminded us of the some of the big risks involved in the operation, there is a reassurance that comes with having met and spoken to the man that is going to hold your baby's life in his hands, especially as he also reminded us of the real need for the operation (but not so urgent that we shouldn't wait until Little S's virus passes) and the intimate knowledge that he has of the condition of Little S's heart and arteries.

Whilst we waited for Mr K, we (including Little S) were shown around the CICU - it's changed a lot since we saw it last five years ago: much newer, quieter, more spacious and more modern - a lot less frightening. We even told Little S that this is where she would be after her operation and she didn't seem too freaked out.  

She was also with us when we spoke to Mr K - not sure that that was our smartest move, although it didn't seem to have much effect - Little S just carried on with her Colour Switch moves and didn't take much notice of our conversation but I bet she picked up on at least the odd word and phrase.

Over the next couple of days, during which we weren't sure if the operation was going ahead or not Little S got very upset before going to bed a couple of times, crying that she didn't want to have the operation, although it made us feel better to some extent when we got her to explain why she was worried and the worst fear she had seemed to be that she wouldn't be able to sleep as they would keep waking her up during the night!

The upshot was that having had all of the emotional preparation for a major operation, and worrying big time about the possible things that could go wrong, and assuming that we would effectively have to cancel Christmas this year, we've ended up with our holidays back and we wait for the date of the rescheduled operation. 

Monday 26 December

It's both Boxing Day and the third night of Chanukah tonight and we're able to make sure that Little S has a wonderful holiday and to forget for a while about the operation. 

We've been told that it will be on 31 Jan with Little S going into hospital the night before. No need to do pre-ops again. 

This afternoon Little S asked, apropos of nothing, whether she will be able to do more stuff after her operation. 

We said that she'll probably still need to use her wheelchair but that she'll have more puff and should be able to walk or run a bit further, climb a few more stairs and feel a bit less tired. And it should prevent her ending up with less puff, which she might do if she doesn't have the op. 

It's a bit of a hard sell keeping her feeling positive about the operation whilst not worrying her too much about the consequences of not having it. 

Meanwhile she's having a lovely time in Brighton, and as long as she's smiling and happy, so are we. 

So whilst the sun is out and the skies are blue, Merry Xmas! Happy Chanukah! And a very happy and healthy new year to one and all!

The Chapel

Tuesday 27 September 2016

There have been times when the sun disappeared, when all we could see were black clouds, and when we hadn’t known if we’d see the day again.

There have been times when Little S could not be comforted or cuddled or sometimes even touched, and when there was nothing we could do to help her other than pray and try to stay strong.

In those times, she is in the hands of some amazing medical professionals – it is their skill and judgement, her stubbornness and fight, and the Divine decree that decides her fate.

And we just watch … and wait … and cry … and, if we have the strength, talk.

Talking is so important, and yet it can be so difficult. Because once you verbalize a thought you make it real.

Sometimes it’s the first step in helping you deal with it – it’s no longer a demon preying on you – you’ve given it form and shape and boundaries – and you’ve remembered that you’re not alone – and that is a source of such strength.

But it always feels like making it real is such a horrendous risk to take – maybe if I don’t talk about it, it will go away? What if I’m not strong enough to bear the words? Making it real might break me.

Sometimes it helps to be alone.

There is a room in Great Ormond Street Hospital that offers a place to do just that – it’s called The Chapel.

It’s quite a small room – a bit like a church, with biblical inscriptions on the walls and a statue of Jesus at the front, but unlike any church I’ve been in, it’s stuffed full of teddy bears!

And it’s a quiet room – one that encourages reflection and stillness – a place to gather oneself.

In the run up to Rosh Hashanah, the Jewish New Year, we are supposed to step back and think about our priorities in the world – what is it that is truly important and worthwhile to us – where should we be putting our energy over the coming year.

It’s a time to remember to seize the opportunities inherent in every day – to remember that most of our problems are not really problems, they are just noise, a distraction from focussing on the real meaning in our lives: our children, celebrating joyous occasions together, drinking in the wonder of the universe around us, making the world a better place.

It’s something that I often do not remember, even when I’m pushing Little S to synagogue in a wheelchair – we might be a bit late, she might have been a bit naughty, it might be raining – all too easy to forget.

But Dr D is giving us a big wake-up call – we received a letter from GOSH to say that Little S’s next major op is being scheduled and will probably be sometime in the next few months. When you open a letter like that it halts you in your tracks – the world carries on around you as you stare at the black typed words on the page or screen, feeling like the black cloud is rushing towards you out of the corner of your eye.

And Dr D is not the only one giving us a wake-up call – as with four years ago, we’ve been agog watching the Paralympians – champions over adversity, destroyers of limitation, superhumans – racing down the track or through the water with what we would normally think of as a disability but what they’ve turned into an opportunity - inspirational.

Little S knows that she has a ‘magic heart’. She knows that she needs a wheelchair to get around any distances more than about fifty yards or so. She doesn’t call this a disability. It’s just how life is.

The things that she does complain about are the same things as any 5 years might: shouting that she wants to watch one more episode of Spongebob Squarepants, screaming that she doesn’t want to go into to her new Year 1 class at school, refusing to brush her teeth.

Strangely, whilst I have to keep reminding myself to not complain about the little things, I’m quite happy to be reminded that Little S has the strength to kick up a fuss about something so trivial!

So the black cloud is looming but for the moment I have an awful lot of simcha and joy to look forward to: it’s the Jewish New Year, it’s Little S’s older brother’s Bar Mitzvah, it’s a time of many opportunities to celebrate with family and friends, all within the next month.

Black clouds are going to have to wait.

Shana Tova U’mtuka (have a happy and sweet new year)

Where there's a wheel there's a way

Until a few weeks ago, if we walked anywhere more then a hundred yards or so with Little S, we would need to push her in a child's buggy. Given that she's now over five years old it was getting to be a little bit silly - should a five year old really still be in a buggy?

Now she's much better off thanks to the NHS and their provision of a child's wheelchair.
It took about four or five months from applying to getting hold of the chair but they came through and, as with all of the amazing facilities that we make use of within the NHS, it is provided for free.

It lets her sit up and see more of the world around her and makes it a lot easier for us to talk to her as she's moving - it also means that people walking past realise that there is good reason that she is not walking - which I suspect will become increasingly important to us and her as she grows up.

Of course, being a five year old girl, we've decorated the chair in pink and purple ribbon - wouldn't you?!

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Little S has started talking to her heart, or more accurately, has received some messages from her heart.

She’s starting to become a lot more aware of her ‘magic heart’ and sometimes gets told by her heart that she shouldn’t walk any further or that she should slow down, or perhaps instead that she should keep playing on the climbing frame.

She's also mentioned that she sometimes has to ignore the messages from her heart as it's hard to concentrate at school sometimes if she doesn't!

She will still say sometimes that she’s ‘not got any breath’ or just ‘too tired’ but I think she’s starting to learn the difference between being tired in the way that everyone gets tired sometimes, and genuinely not having enough breath because her heart is struggling with the amount of oxygen that it gets.

I think this is part of her becoming more aware of her heart and the implications. And we’re certainly also talking to her more about how hearts work and what it is about her heart that is a little bit different to most!

Despite becoming more aware of her differences she doesn’t seem to be at all frightened at the prospect of having a heart that doesn’t work as well as other children’s hearts. We haven’t mentioned any of the potential dark clouds on her horizon and pointed out any of the downsides because it's too terrifying a prospect and doesn't feel like it would help her at all right now. 

I suspect though in time as she develops more awareness she might either start asking, or just worrying, about that sort of thing. So important to start having little ‘heart’ conversations now to ensure that we’re all able to talk about more difficult subjects should we need to.

In the main though, the last few months have been fairly steady in terms of her weekly sats check from the community nurse – Little S is normally about 76% which, to put in context, is a little above the danger zone of low 70’s / high 60’s in which, should she be there regularly, Dr D would want to get on with surgical plans.

Things are not always steady of course – during one week recently, the community nurse arrived during one of Little S’s screaming hissy fits!

Little S wanted something really important to her (like a biscuit or a TV programme) and we had decided that we weren’t giving in as she had been quite demanding and rude in the way that she had asked for it.

It’s always difficult to balance the desire as a parent to let your child just scream on the naughty step versus wanting them to be quiet and just let them have what they wanted -for us, we also have to include our fear that by letting her scream she’s going to cause herself to be sick or worse, as she puts additional stress on her heart.

She’s certainly made herself sick before and ended up pretty drained as a result.

This time we managed to calm her down, eventually, and the community nurse took it in her stride, but her sats we're not so good that week :(

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Sports Day this week and Little S wasn’t going to be left out!

She took part in the pick-up-the-vegetables-as-you-run-along race and she was given a head start on the other girls - our wonderful girl managed to finish in the medals, in third place!

Might be worth pointing out that there were only three runners in the race … but then again that’s not what matters here – Little S gave it a go, wasn’t going to be left out, actually run the whole race, and was smiling about it all day, thrilled that she’d taken part and that everyone was so proud of her!

Surprisingly high sats

Wednesday 24 February 2016

Little S had surprisingly high sats this week – 78% when the community nurse came over on Monday and 84% when Little S went to Barnet Hospital today. 

Although she is no stranger to hospitals, she wasn’t supposed to be in hospital today – this wasn’t a planned visit – she was only there because she fell off a space hopper at school, bashed her head and had a big lump appearing by the time J arrived to pick her up! 

However, once they reached the hospital, with big sis T in tow, Little S was feeling much better and quite enjoying the attention! And with sats of 84%, J wasn’t too concerned either. But the hospital staff were worried as Little S is a bit complicated and red-flagged on her notes as a child to be particularly careful about. 

So, after an hour of waiting for a consultant and with Little S clearly fine, J took the executive decision to discharge her herself and headed back home. 

Even her sats earlier in the week had no right to be as high as they were (note the relative use of the word ‘high’ and remember that most of us would be dead with sats of 78%) given that she was off school that day as she’d been sick and under the weather that morning.

Seeing sats in the high 70’s (and over 80 at hospital) was particularly encouraging, with the reading in Barnet Hospital corroborating the community nurse’s figure earlier in the week, as her sats had been stubbornly low (around 72%) for about three months now, and it had looked like the procedure that she had done in October was not having the effect that we’d hoped for.

Back in October her sats had increased to around 80% but only for the week or so following the catheterisation performed by Dr D that dilated her pseudo pulmonary arteries in four places in order to improve the flow of deoxygenated blood from her heart to her lungs and thus increase her overall oxygen levels – 

I say ‘pseudo’ pulmonary arteries because, as you may well remember, they were constructed during major surgery by combining the extra arteries that Little S had created in utero from her left subclavian artery (from her shoulder) and her right coronary artery (from her heart) before the amazing GOSH surgeons attached them to a small GoreTex tube that took the place of her missing pulmonary valve.

The cath procedure was a lot less risky than major heart surgery but still involved general anaesthetic and had the potential to cause a number of nasty complications if things didn’t go to plan. 

The good news was that it was a lot smoother from our point of view than the previous one in Nov ’14 – 

waiting on the day ward with familiar, friendly nurses that have got to know Little S over the years; 

better, calmer ‘bedside manner’ during the pre-brief which put us more at ease; 

a better anaesthetist, able to slowly, slowly send Little S to sleep without any plaintive cries for help; 

and, most importantly, a phone call of reassurance when the procedure was over letting us know that everything was fine and not (you’ll remember from the year before) creating panic, fear and uncertainty for the longest ten minutes until we saw our gorgeous bundle waking up with her teddy beside her and wishing mummy was there.

Like the previous year it only took an overnight stay for Little S to be ready to head for home – indeed, by the time I’d arrived back at GOSH the following morning, Little S was out of bed, and her and J were playing on the floor, packed and waiting to ‘check-out’: my Dad had come up to London to spend some time with them, bless him, and I suspect hadn’t banked on them leaving the hospital so shortly after he’s arrived! But it takes more than a general anaesthetic and 3 hours of someone fiddling with your arteries to stop Little S getting back home!

Since the cath, Dr D has been talking about a plan for the next stage which would involve more major surgery to replace the GoreTex tube with a proper valve that could be resized as required to grow with her over the next few years and potentially into adulthood. 

To have a plan like this now is amazing. 

Since December 2013 we’ve not been able to think for anything more than a few months ahead as Dr D had not been convinced of Little S’s resilience to invasive surgery. But with the success of the last two caths, he and the other surgeons at GOSH are prepared to take the next necessary step, although not until Little S’s sats show a further drop below 70%, which would indicate that she’d outgrown the GoreTex tube and needed something bigger to provide her body with sufficient oxygen.

We’ve also been asking Dr B’s opinion in Israel. He also thinks we should get on with the valve replacement, and sooner rather than later. But he has a disagreement with Dr D.

Dr D thinks that if and when we do the surgery we should not also close the VSD (the hole in  her heart) whereas Dr B thinks we should. I’d like to understand more about why they think different things before we get to the actual surgery – hopefully the two docs will discuss and come to a consensus on what the right way forward is: if they don’t then I’m not quite sure where that leaves us.

But the great thing is that there is a way forward for Little S, one fraught with great risk, but a way forward nonetheless – hope, again.