Southampton hospital

So today we took Reagan to southamton hospital to see a cardiac specialist, to check her heart.

To recap, she has a leaky valve.....the rest of it i really don't understand but i do know that at Frimley park hospital they really didn't think it was anything to worry about at all and were only referring her to southampton because of all her other problems! Just to be on the safe side.

Anyway, she get weighed and her height is done. She has gained another 2oz since Thurs (4days) and her. Height was 66.5cm which is now off the chart! Typical...just as she gets back on the chart for her weight she drops off for her height!!

Anyway, she had the echocardiogram, which once again she was so good for! The lady commented several times about how good she was and how very laid back she was.....such a good girl (if only she' sleep!!)

We went in to see the consultant and he said that everything is fine. Yes she still has all the things that we thought but they're all innocent and he was happy to discharge her...hooray good news! One less thing to worry about eh?

The only time he may see her again is if she doesn't respond to steroids and is transfuse dependant, after about 18-24 mths, I think, she would start chelation therapy, which will remove the iron form her body because she would have too much.......your body burns up your iron stores when it makes blood, of course hers doesn't so she doesn't use up any iron ad then she gets more iron each time she has a transfusion. So eventually she will have too much.
Too much iron will effect her organs, namely her heart and liver. So she would have iron chelation to remove it but her hear and lungs would still need to be monitored.

BUT.....good news today!

She's having her final lot of immunisations tomorrow because shes going back to see Dr Pelidis on Wed and we will be discussing steroids. She needs to be fully up to date with her immunisations before Ginger on steroids because it will effect her immune system.
She'll be due her MMR soon too and i also will be asking about immunising against chicken pox. They do this as standard in the US so hopefully i can get it sorted for her to have it because it could be quite serious for her to get them while she's on steroids. Peyton hasn't had them yet either and now that shes at pre-school she's more likely to pick them up!