Really good news, celebrate now!

I took Theo to the respiratory clinic at Leicester Royal today to see Dr Pandya and left a very happy Mummy.

Plan now is to slowly but surely wean the C-Pap settings down over the coming weeks and when it reaches a certain point, to wean him from the ventilator altogether, hour by hour, over the following weeks. I was overawed to hear this plan prescribed over such a short time period - i.e. by September - but was reassured it is a best case scenario and may take longer. I hope for the best.

Even more wonderful was 'after he is weaned from the ventilator, we will think about losing the trachy'. I couldn't believe what I was hearing and asked whether it was not the plan to leave that in situ until after any heart operations. The answer was that heart surgery is even more complicated with a trachy and if he doesn't need the ventilator, then other consultants will be asking why he has a trachy at all.
Following this, I was informed that if he copes without a ventilator or trach and continues to grow and develop, it is unlikely that anyone will want to swap his heart for another, despite the stent and obvious cardiomyopathy.

Now I don't want to raise everyones hopes out of proportion..he might not cope so well without some support. He might cope and just not grow any more. He might do fine but it wears his heart out. But we are all under the impression that given his remarkable recovery from say, 50 weeks ago, and the prognosis given then, he just might surprise us all yet!

Don't hold your breath quite yet!