Two Days No Oxygen

James seems to be making good progress in the oxygen area. Both yesterday and today we were able to take him off the oxygen during the day. The doctors require that he stay above 92% and he has been able to maintain good levels of 93-95%.

James is so happy to have the prongs off, especially since his skin was getting a little raw under his nose from always having something on it. We still make him put the prongs back on for nap and bedtime, that way if oxygen is needed it's just a matter of turning it on, instead of waking him ... as it is a bit of a battle to put them on each time, but once on he doesn't touch them. If he continues to do good at naptime then we'll leave it off for nap as well. So far we have not let him go a whole night without oxygen. We turn the oxygen on when we go to bed, but last night we lowered the level again so that he's only getting about 60 ml (when we came home we were at 250ml) and then Rob also turned the oxygen off at 5:30am when he left for work and he did fine. We'll keep weaning him down until we're confident he's okay. Our nights at Mac showed that some nights he was okay, some not ... so it will be a while before we let him go to bed without the prongs.

We're excited to see him off the oxygen but know we've gone through lots of ups and downs before, so we realize this could be short term. At this point we have no idea whether it's the actual medication that is helping, especially since we have no idea what created his last set-back. For now we keep on with the treatment and enjoy it when he has good days.

At this time he gets 4 hours off of his continous tube feeds each day ... so he's an extremely happy boy went let completely free. He does ask to go outside, but with this heat outside is not an option. We try to keep some of his completely tube free times for the evening so he can go out when it's not so hot. We did see again tonight when we let him outside that his SATs dropped into the 80's, but it's still hard to say if this is from extra activity or the weather ... likely a combination. I made him sit for a bit with the monitor while outside and after a few minutes his SATs came back up, so it seems activity plays a factor ... and he sure runs and is more active when outside where he has more room and new things to do ... altho that's not to say that he's exactly calm in the house either when let free.