Scared

Well the dreaded appointments are creeping up on us very quickly and its only a few days until we leave. For those of you who i havent bored with whats happening when... We go to london on Monday 11th, on Tuesday 12th we have to be on the ward from 7am having starved little man and given him no fluids from midnight :( he will then have a blood test, and will be given growth hormones, he will then have another injection some time later and hopefully then he can eat and drink. We also have pre anatesthetic tests on cardiology in the afternoon, so ecg, echo, chest x ray and possibly more bloods... On Wednesday we are on cardiology after again fasting little man from midnight so he can have a GA for the MRI and TOE, these are the tests that are worrying me as little man has a leaking tricuspid valve, which for those of you who dont know is on the right side, and as little man only has the right side of the heart this leak is pretty serious as it is compromising the hearts poor function. From what i gathered from his last appointment, once they look at the results we will be left with one of 3 options either they will just keep an eye on the leak and watch and see (that will be the best case scenario) or they will attempt a re repair which we are told is very very risky as the valve is extremely fragile and may not repair, or he will be referred to be listed for transplant.

So a big week for little man next week and for us. We have booked him onto a duck tour and the london eye on Monday just to give him some fun before all the rubbish, we are also staying in the county hall premier inn as a treat, we have asked if we can have a room overlooking the Thames so fingers crossed this happens as little man loves Big Ben for some reason...

I would like to thank everyone of my dear friends who have supported us in the lead up to these appointments i dont know how i would of got through it without you so thank you from the bottom of my heart xxxx

This blog is dedicated as always to James, Zoe, Katie and all the heart angels gone too soon xxxx