As I have written before Clays type of condition means he can't go on any external machine (such as the Berlin heart) and he is deteriorating rapidly.  The last 10 months I've sat here basically watching my child die. I knew in my guts he was getting really bad the last 4-6 weeks and have mentioned this to family and the drs. Friday we were called in after the heart failure team received his latest Holter monitor results. It was bad news. He is constantly in and out of ventricular tachycardia and atrial fibrillation with rarely a break. He is having over 20 episodes a day with heart rate ranging from 40 to 200. He sleeps 15 -20 hours a day. Each episode leaves him with numb hands and feet, pain in his head, he goes a purple ashy colour, feels faint and at times severe chest pain.  It is scary for him and exhausting. He cannot walk from the toilet to bed without having to stop and get his breath. He is really struggling. Previously a pacemaker was not an option as it was way too risky. They have now given us this as an option as they are getting desperate trying to keep him alive for transplant.  The options are doing nothing with a high risk of death and very quickly not be suitable for transplant or doing the pacemaker with a high risk he will not recover making his deterioration faster and once again not suitable for transplant. If he makes it, the pacemaker could give him more time or it could decrease his quality of life. Because of his condition it cannot be done with a general anesthesia,  it would have to be a local. Its not good odds either way and we question if we want to put him through that trauma to not make it to anyway. The amazing consultants and their team, who have become almost family members, can't even push us in a certain direction like they usually do because they simply do not know which way to go.  We have till Tuesday to make the decision.  We wait any longer and he could deteriorate to a point he will not be suitable for a pacemaker.  Although the risk is high we are leaning towards the pacemaker. If there is a slither of hope it will give him more time we feel we should take it but the fear of the unknown keeps us flipping between decisions. If we decide to go ahead, the consultants want things to move quickly.  I can honestly say I have never been this terrified in my life.