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Angus had a cardiology and dietetics appointment today. Neither Gav nor I were worried about them at all. Perhaps we should have been. Angus' pulmonary hypertension has got to its highest ever since his 2nd open heart surgery and is now a cause for concern. He said that it's at a level where it needs treating, but he wants to review him in 2 weeks because Angus has shown a trend of spikes before followed by lower readings, though his spikes have not been as high as this ever. His sats were 86% on the vent, but off O2 - not great.
 
The cardio said that this makes it even more important for him to get his thoracic expansion operation done soon. He's going to contact Angus' respiratory consultant and discuss his concerns. Depending on what happens at the review appointment, I think they'll be aiming to get Angus in for a sleep study ASAP to see if his O2 and vent settings need adjusting. It might also be that he'd benefit from a cuffed trachy at night as he does have a significant leak. I don't know how I feel about this. I suspect I'll get upset, but I have a real delay switch with emotions these days.
 
On the up side, he now weighs 12.86kg, and is 84cm tall so the dietician was very pleased with him. I even got round to phoning the Endocrine nurse today to tell her of our difficulties getting the growth hormone. She got back to me to say that the delivery problems have been sorted now so the pharmacy should try again. Watch this space.