Cardiac Clinic review

Thursday 7th May Theo was seen at the paediatric cardiac clinic by Dr Duke.

Dr Duke informed us that the time has come to refer Theo to Great Ormond Street to meet Dr Mike Burch, the transplant surgeon, and have the transplant assessments done.
He still has some growing to do (he's 7.3kg) but it may take a while to get the assessment done.

Ironically, Dr Duke said 'his heart looks as good as I've ever seen it!'
Of course, it is still really very damaged.

Please have a read of this transplant website - it is not a simple remedy. We should all be aware of the downside that underlines Theo's life.

http://www.nhs.uk/Conditions/heart-transplant/Pages/Introduction.aspx

This Thursday (tomorrow) Theo will be at the respiratory clinic and we are hoping that there may be progress reducing his ventilator settings, especially as his heart function is looking good (for him).

Life at home is a whirlwind. We are getting multiple visitors each day, not enough sleep and very little play time. All sorts of niggly little problems are unravelling.

We are going to a meeting for families of trachy children this weekend to meet more people and find some support networks. I do wish we could meet someone with Theo's condition, facing the same future but so far nobody has cropped up.

Will get some photos up soon.