This week we had Joel's long awaited cardiology appointment. A 3.50pm appointment slot on a dark, rainy afternoon... doesn't bode well. Our cardiologist is great but she always runs late, this time she was over an hour late!
Joel started crying before we even got into the consulting room. Jamie had downloaded Peppa Pig to his Itouch hoping that would help, I packed sweetie hoping they would help but nothing helped. He cried it out and then surprising was very cooperative, whilst complaining that the wand thing was "owwie on his boom boom."
After an ECG... have you ever tired keeping a two year old still enough for an ECG? we received the results.
1. His ECG was more or less normal :)
2. His aortic valve is undamaged at the moment. :)
3. Open heart surgery will never be an option unless in an emergency. :)
4. We can wean him off the diuretics he has been on since 16 days old. :)
5. The hole may close. 50% usually by 5 years old. 75% by 8 years old. So Joel may be one of these but as time goes on the likelihood gets smaller. :) and :(
6. He may need surgery later but the success rate right now is not high enough to give this to Joel as he seems so resilient and unless there are knock on effects he may just live with it. :)
7. When he comes off the diuretics his weight may improve and then he can come off the milk and maybe the iron. :)
So we left smiling, Joel was full of sweets and crisps and had snow white stickers stuck all over his clothes, shoes and hands. We are back in 6 months to see if he can cope without the medicines, if the hole is smaller or improving... until then we only have to give him his infatrini and iron. A nice break in a 2+ year routine. No more trips to the dr for repeat prescriptions, no more waiting for special orders and the pharmacist reminding us to watch the shelf life or, "Wow, he's a lucky boy with the cost of this gold dust!"
We are grateful for the gold dust, but we are not sad to see it go! Thank you NHS for looking after us.
And to Joel... keep getting better little man, you are so much fun, we love you dearly and your smile and humour brightens up our day; but you are a cheeky monkey too!.
