Well, I'm Exhausted...

...And really, Mason should be too from all of the activity today. Mason read a book with his Staramama, sat up in a Tumbleform chair for a bit, got a crib change, and even played in a fun little saucer thingy for some time today. All in a days' work for a normal kid, but quite the adventure and activity for a little guy who's been heavily sedated or paralyzed much of the last 6.5 weeks. The intensivist was quite impressed when she came by this afternoon and he was slightly agitated, but staturating well. Though we've told her this was the case, I don't think she quite believed us until she saw it with her own eyes.

More changes for today:
We continued to wean down on the Nitric Oxide today without really noticing any change in Mason's saturations. I think he'll be off of it tomorrow. We also increased the calories in his food to help keep up with his nutrition needs. We came down on the methadone a little in an effort to have Mason more awake during the day so that he sleeps better at night. Mason is sleeping comfortably now with the help of some major sedative medication, and hopefully, soon Mama and Papa will be sleeping, too.

Last week, in a Hail Mary pass from Mama, we increased Mason's steroids to a very high dose again. It is in all likelihood a major factor in his rallying over the last few days. Unfortunately, because the steroids are not good long term for a number of reasons (most importantly, they stunt his growth and without growth, there's no new lung tissue), we cannot stay on the high doses. We started the very slow wean of the high dose of steroids again today. Bill and I have talked at length to the resident about our ideas for the wean and they've agreed to go very slowly. Mason does nothing according to someone else's schedule and weaning from the steroids is no exception. I am praying that the steroids were not the only reason for his rallying, but that he is truly tolerating things much better than last week. I must be realistic though, and face the possibility that the last few days have been totally because of the increase in the steroids. If this is the case, the next few days will be a major challenge for Mason and for us. We will likely return to the darkness of late last week and re-prepare ourselves for that possible outcome. Please keep Mason in your thoughts and prayers as we embark on this scary wean with the steroids.