Fevers, Lungs, Reflux, etc.

We've been "enjoying" nighttime wake-ups and instability for almost a week now, but until today our days have been still going pretty good. James is more cranky and clingy at times, requiring some extra lap time and patience, the girls have learned to tread carefully around him during grumpy times, but mostly the days go by pretty "normal". Last night we seen his fevers start earlier then usual, not come down after tylenol, and his breathing enter the next level of unstability. He also woke in the same state, which has usually cleared up by wake-up time. Today, after things settled down a bit, his "normal" breathing has stepped up into the 60-70bpm area. Normal for children is around 20-40bpm. Fevers and "coughing fits" began again around supper time ... so we're looking forward to another sleepless night! :(

This episode has been discouraging as we had really thought that we had reach a more stable time with James now that we know more about what has been ailing him in the last year. We realized that there would be more ups and downs, but considering the recent treatments he's been through and is going through we had thought at this stage things should progress forward and not backwards. We are questioning how much of this is reflux related as we first seen a couple days of "coughing fits" and then the fevers set in. Our first step was to get a new bottle of his Losec medication. Coincidently all this start the same time we started on a fresh bottle of the medication. Although it's unlikely it is the medicine, the phamacy was in agreement that the first thing we could do is get a fresh batch and see if this helps. We received our new batch on Friday and it normally takes a few days to kick in, so by tomorrow if that was the problem we should no longer see these "coughing fits"(which are happening more often). Unfortunately, even if it's as simple as that (which we're now doubting since he still had coughing fits today) and we get the coughing fits under control we still have the lung issue to clear up again.

Regardless we have an appointment with the pediatrician on Tuesday ... as long as he can hold out until then.

With regards to his prednisone, he seems to be handling it okay, unfortunately the eating side effect wore off some time ago. He still has the round face though, so he still looks nice and healthy. He seems to have adjusted to his new mickey tube and doesn't complain as much about it hurting anymore. For the first couple weeks he did not like feeding time at all, now he loves to help us by opening and closing the cap at the beginning and end and helping to push the syringe for his medicine and flushes. He still shows some discomfort and is not near as relaxed when hooked up as with the old one, he realizes that the slightest tug on the line goes straight to his belly (versus the tape that used to offset the worst of it before) and is very cautious.