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"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Saturday, August 24, 2013

Superstar Stalled…

Charlie isn't quite the superstar today that he was yesterday. The process of weaning the ventilator is hard on his little body. Yesterday they had him on room air with the vent doing the breathing. Today they are trying to get Charlie to do some of the breathing for himself. However, this has required the nurses to turn his oxygen back on. His breaths per minute aren't where they need to be...The new goal is to get him extubated tomorrow sometime. Plus, weaning his sedation/pain meds is leaving him a little uncomfortable which also alters one's breathing pattern.

They have managed to wean his calcium drip and his lipids (pretty much pre-digested foods/fats). And his breast milk feedings have increased to 5 mL per hour.

Today feels like a few steps forward, a few steps back. Progress is progress, but we were hoping our smooth sailing from the past few days would have continued. It's a tricky, delicate balance that the docs are trying to find. We don't want to stress his heart in this process, but its tough to not want to scoop him up and run out of the hospital with him in our arms...

Pray that Charlie's lungs begin to respond better to the ventilator and that the docs can find the best recipe for weaning his meds, vent and IVs over the next few days so as to continue making progress without taxing his body too much.

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