clot's going away

We took J.J. in today for some tests and things are looking good. He still has limited air entry into the lower lobe of his left lung, a problem he's had for several years but had been better this last year. We'll be keeping in touch with the respirologist about that one. We're also coming back in 10 days to see the cardiologists and have some more tests. The echo (ultrasound) today showed that the clot is more strips of fibrous tissue now and not a lump. They'd like to leave him on blood thinners for a few months to make sure that scar tissue doesn't build up over that tissue and lead to an early stenosis or narrowing of his new conduit. The clot might have come about because there was a delay in getting J.J. on blood thinners after the surgery. It took him a little longer to get the chest tubes out and then after that he had the lung collapse, leading to another drainage tube for 5 or so days, and they didn't want to start blood thinners until that was out to avoid internal bleeding. But it looks like we're on the right track and the blood clot is clearing up.

Because things aren't going well with the insuflons, we're going to switch to Warfarin ("Coumadin"). That'll mean no more leg injections and no more welts in the leg. We'll keep the rest of the meds the same though for now until we come back in 10 days. We'll also have to do some blood tests to make sure the dose is ok. Probably 2 times next week then once a week for a while then move to every 2 weeks. Glad we didn't have to get a poke today!

We'll hold the ASA for the weekend until the levels are good with the Warfarin. He'll ultimately be on the ASA long term. I found out that Rye's syndrome isn't a problem really any more. The cariologist said they haven't seen it in about 10 years and they think it is associated with giving kids a higher dose of ASA (which they used to do) and also interaction with other viruses.

J.J. still should wait another 2 weeks or so to go to Playland or ride a bike but it sounds like he can go swimming pretty soon!