Home again

The week of antibiotics turned in to 12 days. I should have realised a week was not enough as it is usually ten days at least. While Ethan was admitted they continued antibiotics and physiotherapy. Ethan is finding the physio sessions harder as his heart doesn't allow him to be as active. He had a major episode during physio where he went very cyanotic; extremely blue and very short of breath. It scared the hell out of the physio and the staff around. He usually stops prior to that happening. They are trying to get their hands on some new whizz bang thing which allows him to be passive but moves his chest and makes him cough but it all comes down to budget. The physiotherapists are great with him. He has a couple of favourites but he loves Narelle the best, "I love Narelle". Overall he enjoys physio but sometimes its a real battle especially if he is feeling a little off prior to starting. The plan is to stay on antibiotics for 6 weeks until our follow up appointment, the usual regime of home physio and oxygen as needed. The sildenafil has been increased but there is still room to increase it again which will most likely happen during our next admission. Overall his oxygen saturations can range from 70-80% when sitting still, 60-70% with a chest infection and when he is active they are too low for the machine to detect. They drop during the everyday activities like dressing and eating. The eating seems to be the big issue. He goes blue and grabs at his chest a fair bit. It can be pretty scarey. Overall his cyanosis is getting worse and comes on quicker. We have a cardiac appointment in a about a month which we will be discussing ways to manage this.
We are all happy to be home except Ethan who has already asked to go back!