Thursday 24 January
Another echo and some more blood tests and a chance to have a think about whether the new drug was working and, if so, whether to increase the dosage.
During the previous week, Little S has been doing rather well - a bit of optimism and progress amidst all of the doom and darkness - on a few occasions she was actually toddling around our house (or someone else's house) - not climbing stairs (or anything really), but then she never did, but certainly back to how she was around the beginning of December, before the worrying symptoms began that led to her being admitted to hospital.
And Dr D seemed to think she was making further progress as well - maybe this new drug is having an effect?!
He has told us to increase the dose a little bit - and hopefully over the next few weeks we'll be able to increase it again, as the more we can give her without side effects the better the effect should be on her heart function.
However, we need to temper all of this hope and happiness with a little bit of realism - we are still in a situation where Little S's heart is failing and no one knows why; it is currently stable but potentially could get worse again, either because of the unknown underlying condition or if she picks up a virus or a bug.
Having said that, we're still waiting for Birmingham and Stamford to get back to us and Dr D mentioned today that he and Dr B (remember him - he's the one from Israel) were both at the same conference this week (in Miami!) where they heard a talk by a Dr S from Japan describing an experimental technique that, although involving major surgery and perhaps not directly applicable to Little S's condition, could significantly increase the heart function of a child with heart failure. I'll know more when we get sent some of the details from Dr B.
So for now we have to get on with trying to be normal - living with Little S on a knife edge, managing a heart poised at DEFCON 2, sidestepping the 'how are you?' question from work mates that don't know, and seizing the day but only as long as we've got our oxygen with us.
Most importantly, enjoying the smiles and laughter of Little S and those around her.
Na'aseh Nes
l'Shoshanim
Shabbat Shalom.
How Fragile We Are
Friday, January 25, 2013
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.
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.
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.
Wednesday, January 9, 2013
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.
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.
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.
Tuesday, January 8, 2013
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?
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?
Saturday, January 5, 2013
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
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
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
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