Expert opinions - finally!

Wednesday 24 April

 

We've finally, after what feels like moths of waiting, had responses from Dr Frank Hanley at Stamford in the USA (world expert in pulmonary atresia) and from Dr William Brawn at Birmingham Children's Hospital in the UK (top semi-retired pediatric cardiological surgeon in the UK). Both said that there are probably things that can be done to improve her pulmonary atresia but only if and when she is no longer suffering from heart failure.

Dr Hanley suggested trying an angiogram of her coronary arteries to try to determine if problems within those arteries were the cause of the heart failure, in the hope that it may be something that is reversible. It's not clear what he might be hoping to find and Dr D was not too keen to subject Shoshana to an angiogram for something that is probably quite speculative, at least for the next few months anyway.

So I think we've now got the opinions of the all the experts in the UK and most of the top experts globally.

 

And our summary of their collective opinions is something like: keep going with the medication, make sure she's eating well, live life as normally as possible, celebrate and enjoy that she's doing so well, and pray - because things could still get a lot worse.

 

A good day at the hospital

Wednesday 24 April

Dr D was pretty happy with Little S today.

We had to wait quite a while to see him and when we did it was all a bit rushed as the free parking voucher that we got from GOSH had almost run out so I had to go and get a new one and missed most of what he told J by the time I got back.

And he got on a bit of a mission when we asked him about whether Little S should have a chicken pox vaccine, so that we didn't have to find a friendly pediatric A&E doctor next time Little S plays with a child with pox.

Another doctor just happened to be passing that had got hold of a pox vaccination for his daughter and so knew what to do - and Dr D pretty much ran off to write a letter, by hand, to ask our GP and local pharmacy to prescribe, dispense and deliver the vaccine.

We've not quite figured out yet how to do that but that's another story.

But Dr D was really pleased with Little S. In fact we subsequently got a letter from him in which he said that 'it was fantastic to see' Little S and that 'she is really doing very nicely'.

And, he doesn't want to see her for another six weeks!

 

Brighton (Hove actually!)

Friday 19 April

We'd been in Brighton (well, Hove actually) for a week and it had been a really lovely few days.

It was the first time that we'd stayed in the new family flat - right next door to my Mum, so right next door that they share the same front door and we could open up both flats and let the kids just wander from one to the other.

And Dr D had signed off a request to our oxygen company (not really our company, it's the company that supplies us with oxygen, well with extra oxygen anyway) to supply oxygen canisters to our flat in Hove - so this meant that we didn't need to install three oxygen machines in Hove in the same way as we have at home, and this is because we don't really use the oxygen machines at home, well only when everyone is asleep and even then we're pretty sure that Little S doesn't actually need them. But it's precautionary, it's risk mitigation and no one is brave or stupid enough to stop turning them on.

Anyway, lo and behold, we arrived in Hove and there were a set of large oxygen canisters left outside the flat! Just on the path outside the front door. I say large - each metal canister was about as big as bar stool.

Little S had a great time in Hove - as did we all (although I was at work in Leatherhead for a few days but even then it was great to come home to the seaside in the evening!).

On our first day in Hove we got a message from one of J's cousins who we had seen the day before to say that her little girl had developed chicken pox - in case we were worried about Little S - nice of them to tell us. We were a bit nonchalant about the whole thing (we really should have learned by now) until another cousin of J got in touch to recommend the exact medication that they thought we should be giving Little S to protect her from chicken pox!

So we got in touch with Dr D and, just before Shabbat, we got an email from him to say that yes we really should get hold of the medication, from our GP. However, our GP was a two hour drive away and closing from the weekend. On the off-chance, we got in touch with the pediatric accident & emergency department at Sussex County Hospital in Brighton and a wonderful doctor on the other end of the phone told me that they had the exact medication right there and that I could pick it up straight away. And within an hour of getting Dr D's email, we had the medication and I had a renewed respect for the NHS, and the fact that mountains can be moved if you really need them to be.