A New Drug, or Three Thursdays Second

Thursday 17 January

We were back - this time to try out a new medicine for Little S, an ACE inhibitor that was supposed to relax her arteries and allow blood to flow around her body more easily.

However, they had to check that her blood pressure didn't fall too much, which can happen with this sort of drug.

So we were in for most of the day, with a lot of the time spent checking that the new drug didn't have any bad side effects - and it seemed to be fine, which means that Little S is now on five different medicines every day, plus we also have a whole cocktail of super drugs to be used in emergencies in case anything goes wrong.

Little S also had to undergo the trial that is the blood test - for some reason the nurse looking after her that day refused to believe that she would find it difficult to get blood (even though we reminded her that Little S was notoriously tricky) and it was only after two attempts failed - very uncomfortable, loud and tearful for Little S - that she agreed to call in the doctor that has been so successful on the previous occasion: Dr J.

Needless to say, Dr J saved the day.

Meanwhile, we let Dr D know that we'd sent Little S's echo and angio images to Boston Children's Hospital and that a Dr T would hopefully be in contact soon with their opinion. And we were also trying to get the same images to the world renowned Dr H at Stamford -this was proving to be a bit trickier. We also talked about a famous surgeon in Birmingham, Dr W, and Dr D agreed to ask him as well (although he said that he'd be surprised if he said anything different to GOSH).

But you've got to try every avenue - never give up.

At Least They Haven't Given Up, or Three Thursdays First

Thursday 10 January

Back in GOSH for the first time since Little S was discharged on New Year's Eve.

We had been set up with a special appointment with Dr D rather than having to sit in the normal clinic for hours.

So we went straight into an echo scan, supervised both by Dr D and by Dr F - a specialist in pediatric heart and lung transplants - and so they were both able to see the scan as it was taking place (rather than having to wait for the results) and to chat to us about various possibilities for the next few weeks.

It was a very calm atmosphere, helped by Little S being brilliant - watching 'beebies' and letting everyone just get on with their work around her.

Dr F was there to give us a better insight into why the transplant option had been ruled out by GOSH - and by Newcastle Freeman hospital, the other main centre for pediatric heart transplants - and why it was also so unlikely to work at any other hospital.

Because we weren't now just relying on GOSH - we'd started to contact other experts and centres of excellence, initially in the UK but increasingly around the world - anyone that might be able to provide us with hope for Little S. 

Before we left on New Year's Eve we'd managed to get a copy of Little S's echo and angiogram images on CD from GOSH. Then, with the help of some wonderful friends and family, we sent the disks via Hove, Luton, Ben Gurion Airport, Modiin and Zichron Yaacov to Dr B in Israel. Dr B was rather amazing and just a few hours after the disks had been delivered he had analyzed and discussed the images and called me directly to talk about Little S!

He suggested that there may be a couple of medicines that could help Little S to better manage her heart failure - and he also sent that information to GOSH.

So when we talked to Dr D and Dr F they knew that we'd been busy trying to find some hope - and although a transplant increasingly looked like a lost cause (they mentioned that GOSH hadn't even done a pediatric heart-lung transplant in the last two or three years, and that a heart transplant wouldn't work as Little S's body was used to the blood pressure it receives from a heart with a hole in it - maybe a heart transplant might work if we could find a heart with a hole in!) they now appeared to have not given up either, agreeing with Dr B's suggestion of medication, and alluding to possible 'other options' if Little S got stronger.

And, although they didn't want us to get our hopes up, they were more than willing to help us to get opinions from other experts around the world.

On the previous occasion, we'd left GOSH with the feeling that they'd done all they could and that was it - this time there was definately a different feeling: we were still on the watchlist but at least they hadn't given up.

Thank you so much

All the stars are coming out tonight, they're lighting up the sky tonight, for you, for you.
Take That

Don't give up, 'cos you have friends.
Peter Gabriel

The last few weeks have been really, really difficult.
But without the incredible support that we have received from our wonderful friends and family, they would have been nigh on impossible.

We've received so many messages of love, prayers and strength and it's really helped us to bear the strain - we know we're not alone in this.

And because of the crazy way that communication works these days we've been getting messages from FaceBook, text, Wordfeud, What's App, voice mail, email (work and personal), to both me and Jules - a virtual stream of love coming at us from everywhere.

We even got a couple of actual get well soon cards!

And it is from all over - not just our amazing close friends and family (you know who you are and how much your amazingness means to us both now and as the future unfolds) but also the friends, friends of friends, and friends of friends of friends - often people that we don't know and that had never heard of us before and are now praying for Little S - our synagogue community, our friends' communities - in London, Manchester, Brighton, Israel, America - sending us messages of support, parcels of food and prayers and hopes for better news.

• Tehillim groups here, in Israel and around the world.
• Synagogues saying special prayers for Little S.
• Delivery after delivery of food, sustaining us for weeks to come.
• Psalms and prayers said by friends before their regular poker game - guys you made me so proud to be called your friend.
• Messages from school mates that we haven't seen for a long, long time.

A friend of my mum told her the other day that she was praying for a very poorly little girl with a failing heart and it turned out that she was praying for Little S without even realising!

All so so amazing.

All genuinely making it a little bit easier to cope.

Bless you all.

Oxygen

Our dining room is now a bit noisier than it used to be - there are three oxygen machines in there along with three emergency canisters of oxygen just in case the machines stop working!

Little S isn't on oxygen all day every day - we only really need to give her oxygen if she looks like she is having difficulty breathing.

But because she isn't hooked up to a machine to monitor her oxygen saturation level (sats), we have to be able to see her to tell if she needs the extra O2.

So at night, when we can't see her as we're asleep (hopefully), or when she has a nap in the afternoon, we turn on the machines and pump oxygen up to her room through a dainty plastic pipe running up the stairs.

And as she won't wear an oxygen mask, we need three machines to ensure that when the oxygen wafts across her cot she'll end up breathing in enough of it.

The community nurse came over this week and said that in twenty years she had never seen three oxygen machines used in a single house!

Well, we've got used to the idea now of Little S being a little different to other kids!
But then isn't every child different in their own way?

Home

Little S is home and that means that world to us.

She got back an hour before midnight on New Years Eve which meant we just managed to enjoy seeing our friends on FaceTime to see in the new year.

After a first rather fraught night, Little S has settled down much more and seems to be enjoying being at home and in her own cot much more than being in the hospital!

We've even managed to get her out of the house a couple of times - have oxygen will travel!

And she smiles a bit, laughs a bit, plays a bit, watches cbeebies a lot, eats a bit more and sleeps quite well (at the moment).

So although the future still looks just as bleak, the present has become much better.

And the more we can ensure that Little S is good on the outside, the longer we have together as a family and the longer we have to find a miracle.

Na'aseh Nes l'Shoshanim

Simon

Your song

Sometimes a beautiful song can suddenly mean so much more than it did before.

Take That, Rule The World

You light the skies up above me
A star, so bright you blind me
Don't close your eyes
Don't fade away
Don't fade away

Yeah you and me we can ride on a star
If you stay with me girl, we can rule the world
Yeah you and me we can light up the sky
If you stay by my side, we can rule the world.

If walls break down, I will comfort you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now
Don't leave me now

Yeah you and me we can ride on a star
If you stay with me girl, we can rule the world
Yeah you and me we can light up the sky
If you stay by my side, we can rule the world.

All the stars are coming out tonight
They're lighting up the sky tonight
For you
For you
All the stars are coming out tonight
They're lighting up the sky tonight
For you
For you,

Yeah you and me we can ride on a star
If you stay with me girl, we can rule the world
Yeah you and me we can light up the sky
If you stay by my side, we can rule the world.

All the stars are coming out tonight
They're lighting up the sky tonight
For you
For you
All the stars are coming out tonight
They're lighting up the sky tonight
For you
For you

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.

Thank you for the schnitzel

It's only recently that I've let close friends and family in on the fact that I've been writing this blog - not quite ready to go fully public.

But their response having read it has been really touching - it's reminded me quite how essential their support has been in getting us and Little S to the (for the moment) good place that we are in today.

It's not really about the schnitzel (although it was brilliant to have over Shabbat in hospital!). It's more the emotional support that friends and family have given us - a few words, a hug, a text to remind us we're not alone, the realization that you are probably in this as well as us - it can make all the difference between a crappy day and a smile.

I guess I'm trying to say: you matter enormously - thank you.

Steady progress

Saw Dr D at GOSH today and Little S had her oxygen saturation level measured (mid to low 80's percentage points whilst 'normal' people are high 90's but at least it's the same as it was before her operation - it won't increase until she has the hole in heart closed as, until then, the de-oxygenated blood is still mixing with the oxygen-rich blood) and had an echo scan of her heart and arteries (which she didn't like as it involved being still for 15 minutes but was done relatively quickly).


Dr D was pleased with her progress - called her feisty - and told us we should reduce her medication to aspirin (once a day, at least until her next operation), two diuretics (each once a day, but only for the next week then stop) and paracetamol if she still needs it (probably we'll reduce it to twice a day but just for a few more days and then stop).


And he said that we'll probably have another angiogram in the first couple of months of next year.


So we left in a pretty positive state, given that last night was also Little S's first time sleeping through the night since the op! Now we can enjoy Chanukah and not worry until 2012 :-)

And back again

We're on our way to GOSH for Little S's outpatient check-up.

Best news is that she slept through the night last night!

Best birthday present ever!

Tue 29 Nov


My birthday this year didn't start in quite the way I had hoped - as mentioned earlier, I spent most of the first 6 or 7 hours walking up and down the corridors of Ladybird ward!


However, by then, Little S had been on the ward for almost a day and a half and was getting better fast - so much so that the doctors have been talking about her coming home today. Today! Just fours days after open heart surgery! Incredible.


But then they found that Little S had caught a virus, in hospital. She was a bit snotty and a bit coughy and a bit unsettled. Was this going to stop Little S? No way - not only did it look like she might get back home with just 4 nights in hospital, she was going to do it with a virus!


So the doctors thought that from a cardiac point of view she was ready but couldn't really send her home if she was still ill and they wouldn't know the results of the latest blood test until about 4pm - this would show if the virus was fading or not.


4pm came and went.


5pm came and went.


By now, the registrars on the ward felt certain that Little S would be going home but they didn't have the authority to let us go. For that we had to wait for Georgie. If he didn't arrive soon, with Grandpa G on his way to pick us up (having run out of a meeting earlier in the afternoon for a false alarm), Little S may well have taken after her late Grandma and busted out of hospital whether or not she had official sanction.


Finally Georgie arrived and gave us his blessing - we were going home!


Elation, relief, amazement - what a birthday present!


And to see the kids so happy when we got home, the whole family back together again - we had finally left the scary woods behind ... until next time. 

Fighting to heal

Sun 27 Nov

Little S has always been a bit feisty - her nickname is 'wiggles' as she is always wiggling around - and she has been putting her desire for life to good use whilst in hospital - refusing to give in until she's able to do what she wants to do again.

Little S has also always been a happy, jolly baby - lots of smiles and laughing - far from the baby in the CICU that was either asleep or crying with discomfort or pain.

Even the crying wasn't normal - whilst she has the breathing tube down her nose and throat, she's not able to use her vocal cords so she cries but no sound comes out - it's heart-rending to see as a parent: your baby crying in terror but no sound.

The nurses gave her various medicines to calm her down and keep her sedated - I'd assumed that we wouldn't even see her awake until the next day - but Little S wasn't having any of it - when we returned on Saturday morning we were told that she had kept waking up during the night despite the morphine that they kept pumping into her!

Although it left her tired and in pain we tried to see it as a positive: Little S doesn't give up - whatever gets thrown at her!

All of the doctors and nurses (and Martin K the surgeon) have been really pleased with how she's been doing - 'better than expected' and 'feisty' were used on more than one occasion.

And now, after just two days on CICU, she's getting moved on the Ladybird ward - most of the tubes are out (including the breathing tube and the horrible chest drain) and they've even disconnected the medication tubes from the central line in her neck (although they've left the actual line in for the moment) and she's almost back to a smile!

Eating ...

GOSH has cafes and a restaurant and there are plenty of shops and places to eat nearby (including a swish new shopping precinct), but the place that really helped us whilst we were there was the Shabbos room.

There is a charity called Ezra U'Marpeh that has a room in GOSH (and a number of other hospitals in the UK) that contains all sorts of stuff that you might need over a Shabbat - grape juice, challah, cold meat, dips, cups, plates, cutlery, etc. All stocked on a regular basis and available free-of-charge.

There are quite a few religous Jewish families that go to GOSH and we met a couple of them whilst we were there - one young guy had come over from Vienna to get treatment for his daughter and insisted that we share in his cholent!

Along with the shnitzel from S&G we ended up with quite a good spread of food over Shabbat - as J said before we got there: 'God will provide'!

Sleeping ...

For the first two nights that Little S was in hospital, we stayed, free-of-charge, in accomodation provided by Great Ormond Street, in the 'Italian Wing'.

GOSH ensures both parents always get a room whenever their child is in intesive care - another way that GOSH feels like it is not just a hospital - they don't just fix medical problems, they think about the whole hospital experience from the child's point of view - not just by putting lovely pictures and toys in every ward, waiting room and corridor but by making sure that parents are closely involved with the healing process.

Getting the parents so involved probably helps on a number of levels - it frees up some nursing time for a start which is no small benefit in these 'times of austerity', but I think more importantly it allows parents to get used to caring for their child post-operation, it gives the child vital time with the people they are most attached to which has to be incredibly reassuring and help their healing process immeasurably and it allows the nurses to see how the child is doing whilst being with parents - a helpful indication of whether the child is ready to go home.

Anyway, having a room next to GOSH helped a lot from our point of view - it gave us a space to crash out in and eat in that was away from the hospital - we needed a breather now and again! In fact, one of the first things we were told when we got to CICU (Cardiac Intensive Care Unit) was that we should make the most of the next couple of nights as once Little S got to the ward we'd being staying with her and sleep would be harder to come by - how right they were!

Two nights on CICU and then two nights on Ladybird ward - J took the first night and I stayed there on the second night. Notice the verb 'stayed' rather than 'slept'. One way of looking at it was that I got to spend hours of quality time with Little S during the wee small hours of my 38th birthday - I must admit that by 4am I was finding it difficult to see it in quite such a positive light. Little S and I got to know the corridors of Ladybird ward pretty well by the end of those long dark hours. However, I was pleased to find that I wasn't getting woken up by any of the three other babies on Little S's ward! And if this was the most annoying thing that I had to go through to get Little S back home then I'd take it.

It was with great relief that I greeted J when she arrived on the Tuesday morning, with the possibility that this might be the day that Little S came home!

Praying ...

Over the course of the next few days, whilst Little S was in hospital, I visited the hospital chapel on a daily basis and prayed for Little S to be safe and that she should have a 'refuah shelayma' (be completely healed).


The chapel was full of Christian symbols (but no crosses), but it provided a good space for prayer and contemplation.


I find in reading the hebrew prayers of the Jewish siddur that it helps to find 'hooks' into the text that relate to my particular situation - this adds to the feeling of being connected to a community whilst praying (as the same prayers are being said by Jews all over the world) by making the prayers feel more individual.


In hospital, whilst reading the shema, I found myself comforted that I found six instances of the word 'lev' (heart) - two in the first paragraph, three in the second and one in the third. They were mostly not related to the physical organ of the heart but it still helped make the prayer more about Little S and her fight to be healed.


Then in the Amidah I found that there is a prayer 'mevorech hashanim' which is normally translated as a blessing for the year ahead - already pertinent to Little S and her recovery - but one could make a translation of "blessed is god who blesses the Shanis" and suddenly it could not be more personal.


Somehow these things helped.

Waiting ...

Fri 26 Nov

In hospital by 7:30 am.

When we left Little S (at 8:30), we were told that it would be 5 or 6 hours until we would see her again - that's a long time to wait.

I held her on my lap as the doctors sent her to sleep - and then we had to say good bye: definately the hardest part.

I've found that comfort food helps to ease the the worries, so we went to Starbucks for a large coffee (tea for J), a cinnamon pastry and a pain au chocolat. We tried to keep our minds off the impending update that we'd been promised at 1:00. This was made slightly easier when I opened the door to the toilet and found a lady in there hastily pulling up her knickers!

After some wandering around shops and parks and grabbing some lunch, we headed back to the hospital with no small amount of trepidation.

The nurse smiled as we entered the day ward and told us that surgery was going well, but that we wouldn't know more for another hour.

So we checked in to the flat provided by the hospital for those with kids on intensive care, ate lunch and went back to the day ward to be met with another smile - come back in another hour and she should be out of surgery and on to intensive care.

Smiles, relief, but not wanting to be overly optimistic as there were a lot more boxes to tick before Little S was 'out of the woods'

In fact, when we got to intensive care, we were told to come back in another hour as our surgeon was running another procedure on the ward (on a different baby) and so we couldn't go in.

More waiting ...

... and finally we saw our Little S, alive and doing well, scarred and full of tubes but looking not too far off normal.

Tears in our eyes - we're not out of the woods yet but the woods have got a bit less scary already.

It's today

We're on the way in to the hospital ... stomach churning ...

Waiting again

It's been a couple of weeks since Little S was supposed to have her op and now we're counting down again - three days to go.
J is going in tomorrow for another blood test but this time she's taking a friend so it should be a bit less traumatic.
Not looking forward to the week ahead.

Cancelled

An hour and a half ago we were told that tomorrow's op has been cancelled - J called me at work.

It's a complete mind spin and an emotional roller-coaster - it felt like I'd gone into shock.

We're rescheduled for 25 Nov, so we've somehow got to wind down from this mass of fear and anxiety and back to some semblance of normality for another 2 or 3 weeks before going through it all again.

Little S will have to go through another blood test - J and her went to the hospital today for one anyway and there was 'a lot of screaming but not much blood' (J's words).

J will have unpick all of the complex logistical arrangements that she's made for this week and then do it all again in a fortnight.

But I guess if being cancelled is the worst news we get then I'll take it ...

Nearly Baby

Written shortly before Little S was born:

My wife,

The wonderful woman lying by my side,

Has a baby in her belly.

A baby that kicks and pushes and gives her indigestion

And makes her wish that she wasn’t pregnant anymore

But if that baby was –

No longer in her belly –

Born –

It would cry and breathe and poo and smile and drink and walk and be –

A new child

To love

Yet not so long ago

This baby was not –

Anything –

It did not exist

Except as an inkling in my mind

And the mind of this wonderful woman

Lying by my side

It's tomorrow

What should I be feeling?
I think I'm in denial.
Every time I think about it my skin crawls.
Just get it over with - no, don't do it!

I am absolutely really very cute

We have this little sister

She’s small and very funny

She turned up not too long ago

And we all call her Shani

Shani does not do that much

Because she is so small

She sleeps and cries and drinks her milk

But can’t yet play football!

Shani loves to have a bath

And splashing is such fun

She giggles whilst the water goes

All over everyone!

Shani looks so gorgeous

And cute in all her clothes

She smiles and coos and makes us laugh

Our love for her just grows

We have this little sister

She’s small and very funny

She turned up not too long ago

And we all call her Shani

Scared but hopeful

I don’t mind admitting that I’m scared, bloody scared. It kind of helps to admit it to somebody else or even to write it in this blog – it somehow becomes less frightening – a trouble shared really can be a trouble halved.

But however many times I talk to people I am still left with an immovable dread – it’s not the same as worrying that something bad is going to happen – I know that there is no point worrying about things that I can’t do anything about – but there is something that remains that knows that Little S is will be going through a dangerous event, a risky operation, one where all precautions will have been taken by the best surgeons in the country and yet one where the outcome is uncertain and possibly bad.

How can we do this to our little girl?

Yet there is also hope.

Hope that Little S will not just survive but be fixed (at least partly) so that she can move towards a normal life. In fact, even though she has a ridiculously screwed up system of arteries and her lungs are being powered by blood that should be going to her arm and heart, even with this mess to clear up, by far the most likely outcome is that the operation will be a success.

That has to give us hope.

She's so wonderful

Two weeks to go until the operation.

Little S is being more gorgeous and lovely every day

I’ve been able to spend more time than usual with her as there have been quite a few days off recently for Jewish festivals.

She’s sitting up properly in her high chair and on her play mat – eating proper food (well, little bits of cucumber and challah anyway), drinking water herself, playing with toys, smiling and giggling when she sees me (or J or the kids obviously) and always wanting to be with one of us.

Wonderful.

Post Pre-admission

10 Oct

Arrived at 11:00 and started off quite well with various tests: ECG, X-Ray, height, weight, blood pressure, oxygenation, ECHO. It was all going quite smoothly.

Little S was brilliant all day although she didn’t much like the blood test when the nurse was wiggling the needle in her foot trying, unsuccessfully, to get a vein.

Following the tests, one of the nurses spoke to us at some length about the logistics of pre and post operation:

• Little S would probably be in the cardiac intensive care unit (CICU) for one or two nights
• Then transfer to the Ladybird ward on either high or low dependency beds and likely to be home a week or so after the operation
• Whilst in CICU the hospital would find us somewhere to sleep in the hospital grounds and in Ladybird ward they put a z-bed up next to the cot
• Visiting hours are 8am to 8pm but only two at a time in CICU (although they are open 24/7 for parental visits). 

We had a short visit to see the CICU - much less scary than we had envisaged.

But, following another wait of an hour or so, the conversation from the surgical registrar provided us with quite a scary reality check. He described everything very clearly: reminding us of the details of Little S’s condition, what they are going to do during the operation and the many horrible things that could go wrong.

In describing Little S, he pointed out a couple of things that I hadn’t appreciated: not only does Little S’s current ‘plumbing’ put stress on her lungs but, because one of the arteries feeding the lungs is coming off the right coronary artery, the heart is not currently receiving as much blood as it should which could result in further heart problems. Also, the left lung is getting blood from the left subclavian artery which flows from the aorta thus receiving higher pressure blood than it would from the pulmonary artery – potentially creating more problems for her lungs.

He told us that they will use a Gore-Tex tube to connect the reconstructed pulmonary artery to the right ventricle chamber of the heart and then, in six months to a year’s time, they’ll operate again to replace the Gore-Tex with part of a real donated artery and valve and close the hole in Little S’s heart.

The most scary part was that he described the operation as ‘high risk’ – a consultant earlier in the day, Dr D’s boss in fact, had already told us that Little S has ‘very, very unique morphology’ so we had guessed that this is not going to be routine surgery but to hear ‘high risk’ so bluntly from the mouth of a surgeon was quite different.

Once on our own, tears followed.

We know that there is a risk that Little S might not make it through surgery but we have to trust in the doctors, the surgeons, our judgement, God, anything we can grab hold of to give us the hope we need to get through the next few weeks.

Dare to hope

In the lead up to Yom Kippur this year I've spent a fair amount of time thinking about Little S and about how I've been approaching The Day.

I've realised that the worrying I've been doing about what horrible things could happen to Little S is not only counter-productive (as, having committed to the operation, there is nothing we can do to affect its outcome) but it is also the easy option. Much harder to my mind is to dare to hope that things are going to turn out alright.

To hope (as distinct from just blindly assuming everything will be fine) takes faith, courage and belief in our decisions and the risks that they imply.

Is this the same as religious faith? Quite possibly. What is certainly true is that being Jewish has provided me with a history and theology that allows for and promotes hope, however dark the world might appear.

Pre-admission

On the train with Little S heading to the hospital for pre-admission day: tests, meet the surgeon, find out the details of the logistics for The Day and make everything so much more real.

Not sure how good an emotional place we'll be in by this evening.

Surgery confirmed

14 Sept

J spoke to the hospital today and they agreed on Nov 1 as the date for the operation with Oct 10 as ‘pre-admission’ where we get to meet the surgeon.

It’s all becoming far too real.

Waiting

9 Sept

Got back from a wonderful family holiday in the Algarve – I wanted to ensure that we did something special this year as who knows whether Little S will be able to manage holidays abroad following the operation.

We need to make the most of the time before as we just don’t know what will happen after.

But as yet no date for surgery.

Waiting list

A bit later in August

We sent off the form to request that Little S is put on the waiting list for surgery.

Dr E

August


Through a friend of the family we were put in touch with Dr E soon after we found out the extent of Little S’s heart problems.


He is a lead paediatric cardiologist at one of the best units in Britain yet willing to take time out for phone calls about Little S – providing us with more essential information and supplementing what we heard from Dr D.


I had already spoken to him twice before we agreed with Dr D to get a second opinion from Dr E – the two doctors knew each other well and so were quite comfortable with the referral.


Dr D sent Little S’s results to Dr E and, after a few more weeks, we received a letter that seemed to essentially confirm Dr D’s recommendation – we should go ahead with surgery. Dr E and his team had suggested some minor differences in approach but said that Dr D had provided a perfectly reasonable suggestion.


I spoke to Dr E this evening and he confirmed that his letter did indeed recommend that surgery was the right way forward – I guess that this was what we had expected but maybe part of me had hoped that Dr E would come up with some radically different procedure that was much less invasive and risky for Little S.


So now we have two recommendations from two different top consultants, and both ask for our permission to perform open heart surgery on Little S in order to mend her heart plumbing.


As much as we might feel that we don’t want to subject Little S to anything like this, with this second opinion our decision is effectively made for us.