We are slowly, but surely, moving in the right direction. Aaron had a good night, and we're hoping to make a jump to his home vent sometime today. Initally, yesterday morning, he was moving fairly quickly down on his oxygen and we thought we might get there last night. But as mid-day came, he decided to stop sprinting and just settle in for the long haul. We dropped from 85% oxygen (bled into the vent, not saturation rates) to 65% in just a couple of hours yesterday morning. Since then, we've moved to 45% but each step is taking from a few to several hours. They want to see him at 40% oxgen while maintianing a saturation rate in the high 90's before trying to switch him. BUT it's also been really nice to not have the stutter steps or backtracking that is so often part of this process.
Labs have all come back and it looks like our good friend rhinovirus, aka, the common cold. Another reminder that we just cannot be lax about germs around our little guy.
He also started back on his regular feeding schedule and seems to enjoy having a full tummy again. We know he's doing better because this morning we couldn't keep him upright in his bed. He kept squirming down to lie sideways and kick his casts against the metal rails. He's upright now, but only because he's napping! And he's been happy today. So we've gone from lethargic on Sunday, to cranky and sad yesterday, to my happy bug coming back out to play again! Yea!
And speaking of casts, they were supposed to come off yesterday. We have to go to Shriner's for that because he'll also need to be fitted for his braces and they need their lab for it. But his ortho, Dr. H. stopped by here after work yesterday to see him and said just to page her when we were getting close to discharge and they'd just get us in. So grateful we'll be able to avoid another trip up this direction.
So it's just baby steps for now, but that's okay. My best guess at the moment is, we'll be out of here on Thursday. Tomorrow is a slight possibility, and it might not be until Friday, but at least we're moving in the right direction.
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
No comments:
Post a Comment