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.