Lots of news

Since last posting we have managed to go away on a mini break to the caravan in Wales. That was a mammoth effort but was lovely too. Gorgeous weather and we all paddled in the sea - even theo, but mainly in his wellies!!


Respiratory progress is excellent - as of this week (June 17/18th) we have trialled Theo OFF THE VENTILATOR at night and his O2 Saturations remained well above 90% throughout. Obviously the cumulative effect of the greater effort means he will need monitoring again fairly soon but hey, we knew he could do this.

Cardiac side..well, another good appointment with dear Dr Duke. Theo's heart is holding up, function still as bad as ever but no deterioration currently, so we are all content with him at the moment. There has been some more fine tuning of medication levels and we have been warned that without the ventilator we need to be more proactive if he gets into any breathing difficulties, because everything is down to his heart now. But again, we look to the summer with confidence that things will be...ok!!

Next appointment in respiratory in a months time, when, if he has managed well without the vent, he will be booked in for his decannulation of the tracheostomy. Could the summer get much better? We can look forward to taking him swimming!! Will be ordering the warm belly wetsuit now (special ones for cardiac children to help keep them warmer).

After that, Great Ormond Street in August for the transplant assessment again, plus some scans on his veins and kidneys to see whats going on regarding vascular access and renal function - all for future reference really, so that when the time comes for the transplant, there won't be time wasted by surgeons looking for the best veins to put lines in..

That might sound really busy but for us, its a bit of a holiday! Only 2 more appointments in the coming months?!? Surely not. And only 2 admissions planned, not even emergencies. Life surely isn't getting a little more predictable? Wait and see.