20/11/07

Things haven't gone so well for Elis over the last couple of days and yesterday the consultant spent a lot of time with him. He had a heart scan and ECG and it now seems that his problems can be attributed to pulmonary hypertension. The right ventricle which supplies the lung has been working so hard it has become enlarged and so is squashing the left. It also can't push out enough blood (because of fluid retention amongst other things) that blood is just being shunted back across to the left ventricle, therefore not being oxygenated. It's not an easy condition to treat, but there is some medication on its way from Gt. Ormonds Street Hospital that should arrive today around 12 noon. It will then take 24-48 hrs before it takes enough effect for them to review dosage. At the moment he is back in an incubator on 5 litres nasal, 65% ambient and the facial mask and his sats have been 30-70, but averaging 50-60 which obviously isn't great news either. He's been given lots of extra frusemide and now we all just need to keep our fingers crossed that he hangs on in there for the next few days until the treatment has a chance to help. If at all possible they will avoid going the ventilation route as that could be counterproductive and be extremely risky.

There is nothing any of us can do now. It's up to Elis to keep going and as he is not showing signs of distress this will hopefully relax the blood vessels in his lungs to reduce the pressure on his heart. The doctors will of course respond if necessary. Josie and Glyn are looking after each other and both know that everyone is routing for Elis. They would prefer to keep a low profile during this stressful time but we hope to have better news as the week progresses.