Last week's very bad news

A lot of mainly bad stuff has happened since my last blog.

We've been in GOSH for the last nine nights and Barnet hospital for a night before that.

Most of you will already know but Shani's heart has weakened again since last month and the doctors don't know how to stop it from weakening even further - in fact they don't think that she'll last for a lot longer.

Dr D told us this last Thursday after a committee of top consultants and surgeons at GOSH had discussed Little S that morning. They concluded that it was unlikely that they could determine the cause of the heart failure (although they would try), let alone fix it, and that neither a heart nor a heart-lung transplant were viable due to the complicated structure of Little S's arteries - they wouldn't be able to connect everything up properly.

On hearing this J and I were knocked for six - we were unable to do anything apart from cry and stare blankly for the next hour or so. Suddenly we were told that our gorgeous girl who has been, miraculously, fighting to stay alive for the last two years was not going to make it. 

When? We don't know.

Unless either she pulls off another miracle and manages to find a way to stop her heart failure and get things back to how they were a month ago, or someone else in the world has a way to save her that has eluded both GOSH and the Evelina hospital (we got a second opinion from there from Dr E who agrees, reluctantly, with GOSH).

Unlikely maybe, but we don't stop hoping and praying whilst there is still a possibility.

Never give up - that's what my rabbi told me today.

So we'll be here at least until the middle of next week (they think we will be able to go home by then but that won't change the bleak outlook for the longer term) which means a second Shabbat is looming.

Keep us in your thoughts and prayers  - the incredible love of so many of our friends and family, and people that we don't even know, is what has been keeping us going.

Shabbat Shalom.

Chanukah and miracles

This week was Chanukah, a time to remember miracles and to practice hope and faith.

In the Chanukah song mo'atzur, there is a verse that describes the Chanukah story, and this year I noticed that it includes the line Na'aseh Nes HaShoshanim.

This is usually translated as something like 'who made miracles for the roses' or 'for the beloved' but which could also be rendered simply as 'who made miracles for Shoshanas'.

So this Chanukah we're not just thinking about the miracles of military victory and spiritual light but also of our wonderful miracle girl Little S.

Chanukah Sameach to you all.

An uncertain future

Monday 3 December

Received a long awaited email from Dr D regarding the results from Little S’s angiogram.

Not happy.

We had hoped, and been led to believe, that the letter would let us know when GOSH thought that they would be scheduling Little S’s next major operation to give her a proper pulmonary valve and close the hole in her heart.

However, instead we found out that Little S’s pulmonary artery hasn’t grown as well as expected, both where it meets her heart and within the left side of her lung.

On top of this it appears that she also now has reduced ‘cardiac function on the left side’, presumably meaning that the left side of her heart is weaker than it used to be.

And because of these unexpected issues, the surgeons do not feel that they are able ‘to plan an operation at least for the time being’ …

So we're left with uncertainty and questions:

-          What happens to Little S if they don’t operate ‘for the time being’?

-          They’re going to monitor her instead, but to what end?

-          And most importantly, should we be worried about Little S’s immediate health?

Before Monday we had a plan (albeit with risks) to give Little S the best possible chance at a decent future.

But now, we don't.

And, as a result, it’s becoming easier to read ‘symptoms’ of Little S’s condition into her behaviour: she’s fairly sedentary, doesn’t climb stairs, breathes heavily.

So does this mean we lose hope?

No - we have to keep hoping and praying.

Praying that Little S’s miracle continues and that she chooses life.

Because we always will.

Hoshana Shoshanah

Chanukah Sameach 

Another day, another catheterisation

So we were back at GOSH last Tuesday (16 Oct) for an angiogram for Little S.

 

Little S has grown up a fair bit since last time – in particular she can talk now, well she can say a few words anyway.

 

This meant that when it came to leaving her with the doctors for her general anaesthetic, instead of just crying as we said goodbye she looked straight into our eyes and screamed ‘Mummy!’, ‘Daddy!’ whilst we tried, choking back tears, to say that we loved her and would see her soon.

 

Ninety minutes later we were told that the procedure had gone well and that we would soon be able to see Little S again – in fact we heard her first. Although it’s not pleasant to hear your child’s cries down a hospital corridor, there is also something comforting in knowing, even before you see her, that she is in a position where she can cry.

 

Once Little S was back on a ward, we found that the iPad we had with us proved to be invaluable – Peppa Pig and Pocoyo videos kept her occupied for ages and she loved flicking through the family photos that we had on the tablet as well. However, one of the photos we looked at included a picture of our car – I realized that I’d used the wrong number plate to get a parking voucher when we’d arrived at 7:30 that morning and, by the time I got to the car, the parking officers had just slapped on the ticket!

 

After an angiogram they need to see that Little S’s oxygenation levels are good enough before she is allowed to go home. Dr D came to see us – he let us know that the procedure had gone well, that they saw nothing that they weren’t expecting, that they didn’t have to widen any arteries during the procedure and that based on the results they would get in touch with us soon to discuss the next stage (or operation) – he said that Little S needed to be over 75% oxygenation by the time the day ward closed, otherwise she would have to be admitted overnight – she made it,  but only just: she fell asleep for an hour and that tipped her sats upto 76% allowing us to go home … just.

 

And now we wait to find out when we have to face the next, much bigger, hurdle – but, yet again, Little S, our miracle girl, is being a trooper and, in the words of The Beautiful South, ‘carrying on regardless’.   

The Paralympics and Rosh Hashana

The London 2012 Paralympics have finished and left indelible memories of incredible athletes reaching the summit of their fields and leaving us, well me anyway, frankly gobsmacked.

We were lucky enough to make it to the Olympic Park to see Aled Davies (amputee) win discus Gold in the Olympic Stadium and Josef Craig win the S7 400m freestyle Gold in the Aquatics Centre, where we were also privileged to see Josef receive his medal and to be part of an ecstatic crown singing the National Anthem.

In the Aquatics Centre it was one jaw-dropping performance after another.

In particular the S4 50m where a Chinese athlete with no arms and only one leg demolished the field to swim to victory and the S1 50m where the fact that any of the swimmers (all with paralysis in multiple limbs) finished at all was amazing enough let alone that they were all competing at an unbelievable standard.

We came away with our understanding changed of the limitations of the human body and spirit – simply put, there are none.

Little S was not with us at the Olympic Park (she was asleep!). Although she currently has no disabilities, she may grow up having to grapple with her own perceived and actual limitations. Given her ‘condition’, she may not be able to run as far or as fast as her brother or to bounce for as long as her sister or to play all the games that her friends play. But then again, given how fast we’ve seen Jonnie Peacock run with one leg and how far David Weir goes at top speed with none, this is really the wrong way to look at be thinking - Little S should be able to approach life without limits, without reduced expectations and without pity.

As Stephen Hawking said in the opening ceremony of the Paralympic Games, ‘there should be no boundary to human endeavour’.

And, as we approach the Jewish New Year of Rosh Hashana, it’s a good time to consider how the sentiment of pushing back the boundaries of what we can achieve could apply to all of us and the limitations that we consciously or unconsciously place on ourselves.

Wishing everyone reading this a Shana Tova and a year ahead full of sweetness and joy.

Another check-up

Back at GOSH again yesterday (Mon 4 Sept) for another check-up (and two hour wait!) for Little S.

 

Dr D was on good form – blowing bubbles to keep Little S (and Not So Little T who was also with us) occupied – apparently J is the second best bubble blower he has ever met!

 

And Little S is still doing really well – Dr D said we should get an angiogram scheduled in the next month or two to check her arteries in more detail – which means another general anaesthetic for Little S. They would then use the results to make some decisions about when she might have her operation to close the VSD (hole-in-the-heart) and replace the goretex tube with a proper valve. This could be at the beginning of next year but, if Little S is doing really well, they may delay by a few months or even up to a year or two as it is easier to do this kind of surgery on a larger child (which makes sense – the intricacy of what the surgeons do is mind blowing so anything that makes their job easier has to be a good thing – although, if she’s older, it would mean a lot more difficult conversations with, and probably questions from, Little S).

 

We also talked a little about whether we should try to find out the cause of Little S’s heart defect – Dr D said he’d make sure that the appropriate genetic testing was done at the same time as the angiogram which would let us know if the condition is genetic or if it was just very bad luck. ‘Very bad luck’ would be a better outcome really as a genetic condition would mean that there’s a chance that our grandchildren could have the same condition. Either way, the rest of the already born family have nothing to worry about – Little S’s condition does not increase anyone else chances of heart problems later in life.

 

So we headed home again – having Not So Little T with us kind of took our mind off Little S’s ‘condition’ - we can put off our concerns about major operations and heart conditions for another month or two – until the angiogram comes around. (Update: now scheduled for Tuesday 16 October)

Check-up

This week Little S went back to GOSH for a check-up.

She was fine - in fact the doctor (who hadn't seen her before) said that if he hadn't know about her condition he would never have guessed - she's doing really well.

 

However, just the fact that we needed to go for a check-up brought a lot of anxiety back again -  Little S is so outwardly healthy, it is so easy to put any issues right to the back of your mind for quite a while - which is great, until those issues surface again.

 

And then after the check-up we tell everyone that Little S is doing well - but that doesn't mean that she's 'recovering' or 'out of the woods', it just means that the previous operation was successful and that Little S has had no bad reactions.

 

I say 'just' when I actually mean that Little S is a bloody miracle and the doctors and surgeons are amazing!

But I also say 'just' as these current check-ups are steps on the way to a further major operation at some point in the next year or so and that continues to hang-over us like a bad cloud.

GOSH on the BBC

The BBC have been showing a series about GOSH over the last few weeks.

 

In each episode they take a look at various parts of the hospital and the amazing things that they do - this week it was time to examine how the hospital manage congenital heart defects and how they try to help the babies that are born with terrible things wrong with their hearts and arteries.

 

Of course, Little S has a congenital heart defect so this should be a really interesting programme from our point of view.

 

But GOSH on the BBC isn't all good news and amazing success on the operating table – and I don’t want to watch babies dying whilst surgeons desperately try but fail to fix their hearts.

As good as we could expect

Saw Dr D again today for a consultation.

He told us that he'd been looking at Little S's angiogram this morning - not just to pass the time but because he was discussing her prognosis with her surgeon.

He then passed on regards from a medical student who has also been checking out pictures of Little S's arteries - she became interested in Little S and her anatomy when she sat in on a prior consultation.

And then Dr D mentioned the annoyed 15 year old girl that is the reason that Little S is only 'almost unique': the girl also has pulmonary atresia with ventrical septal defect and mapcas, where the left pulmony artery was connected to the left subclavian and the right pulmonary was (and this is the 'almost unique' bit) connected to the right coronary artery.
She's annoyed as we have robbed her of her singular status - she is now only 'almost unique' as well!

However, to us this was great news - there's a kid with the same condition as Little S and she's made it all the way to being a stroppy teenager!

For Little S herself, Dr D is very happy with her - she is doing well given what she's been through.

So they'll see us in another three months at which point they'll probably decide to do another angiogram and, assuming all is still going well, schedule another operation to replace the gore-tex tube with a proper human-donated valve and close the hole in her heart.

If the proper valve functions as it should, Little S might not need another operation for 10 years or more, at which point they'll have to replace the valve with a grown-up version.

That's if everything continues to turn out well - and currently they're hopeful, so so are we.

Mincha made meaningful

I’ve mentioned previously that there is a prayer in the afternoon service (Minchah) called ‘mevorach hashanim’ which I managed to translate as ‘blessed are the Shanis’.

Since then, on reading the Minchah amidah, I have further noticed that the prayer next to mevorach hashanim is ‘rofey choley amo yisrael’ or ‘healer of thy people Israel’. I was a bit dumbstruck on realizing this – to find a prayer containing Little S’s name right next to a prayer calling for healing, what are the chances?

Well, whatever the chances it’s there and it makes the Minchah amidah an awful lot more meaningful – whether or not saying this prayer actually changes anything I don't know, but it makes me feel better for trying – somehow, by praying, it makes me feel that I’m finding something small to do to help Little S and not just leaving everything to the surgeons.

A date with Dr D

We’ve got a date to go back to GOSH and see Dr D again.

It’s March 5.

Expecting this to be another heavy day when we get brought back to reality with talk of the second major operation, probably later this year.

But let’s not think too much about that for another few weeks …

... and back again

So we made it back home again and Little S is pretty much fine - it was a longer day than we'd hoped but about as long as we'd expected.

The procedure went well - Dr Y was in charge - we hadn't met him before but he has the same calm confidence as most of the consultants we'd seen at GOSH. It was Dr D's clinic today and it was quite good to get to know another of the consultants at the hospital.

During the catheterisation Dr Y checked that the blood was flowing well between Little S's heart and lungs - then, in each of the two main arteries that had been moved during her operation, he inflated a small balloon to enlarge the arteries, increasing the blood flow. He didn't fiddle with the smaller arteries that Little S developed to get blood to her lungs but they don't do much anyway. The arteries that have been inflated should now ensure that Little S is fine until her next operation.

Little S came through the procedure in one piece and was recovering well (although crying whenever any of the doctors or nurses came near her - after a few hours she began to get used to them and eventually was smiling and laughing at them all) until the nurses realized that she didn't seem to have a pulse in her foot! This was the foot on the same leg that had conveyed the catheter inwards (this was not the intention: they had tried to insert the catheter into her other leg but, in the same way as they are never able to get any blood from Little S, they failed to find a suitable artery for the catheter) - it seemed as though the procedure had caused some clotting and reduced the circulation in her left leg.

So for most of the afternoon, the nurses and doctors tried to find a pulse in Little S's foot and we were unsure if we would have to stay in overnight whilst they figured out what had gone wrong and how to fix it - we were assured that this was not anything to worry about: it was very likely to be sorted quite quickly but, worryingly, I could feel that her lower left leg was significantly colder than her right and I'd feel a lot better once Little S felt a lot warmer - in both legs!

Eventually, after they had been dripping heparin into her for an hour and a half, Dr Y returned and found her pulse - Little S could go home!

She's been a trooper all day - guzzling down milk, wriggling incessantly, playing and playing, smiling for the nurses (eventually) and even laying still for about ten minutes during her afternoon ECHO scan (unheard of).

So we've made it back home again and Little S is fine - another 6 weeks or so and we get another chat with Dr D to figure out what to do next.

There ...

Taken Little S to hospital again today for a cardiac catheterisation, hopefully she'll be in and out in a day.
It's similar to the procedure she had done back in the summer - they squirt some dye into her (newly reconfigured) arteries and then use that to track the blood flowing between her heart and lungs and check that her operation had the desired effect.
However this time they may also need to take the opportunity to stretch one or both of her pulmonary arteries using a (very) little balloon inserted into her blood vessels - to increase the blood flow to her lungs.
So, I guess a bit riskier than last time.
It's weird to be back at GOSH - new year, new procedure - we can no longer stay in the holiday oblivion we managed over Xmas time, pretending all was well.
Little S wasn't exactly best pleased to be back either - prodded and measured with stethoscope, scales and sat-meter (measures oxygenation levels in blood - 'saturation').
Currently we're in Starbucks, waiting, listening to cool, calming music - then soon back to GOSH to see our baby ...
... please be well.