Good morning everyone, Yesterday was a pretty uneventful day for our little girl and today is shaping up to be similar. They have been working on fine-tuning her sedatives and reducing her fluids. The focus now is her lungs. The surgeon told us this morning that he is very happy with how her heart is doing and it is just her lungs to work on now. He hopes to remove the snairs from her heart and close up the chest opening a little bit to prep her for a complete closure in the next few days. They'll do all of this gradually so the heart can adjust to the increased pressures.
She is on several different medications for pulmonary hypertension as well as very high levels of oxygen on the ventilator and nitric oxide (molecule of the year in 1992, it helps dilate the vessels in her lungs). They are trying to wean her off of both, very gradually. She was on 90-100% O2 initially, but they now have her down to close to 70%. And NO is at 21% down from 30 or 40 yesterday. She is heavily sedated right now, if she moves the pressure in her lungs goes up, so they have to balance how sedated she is with how much the vent is putting in. It's a bit confusing, lots of numbers being thrown around.
Reducing her fluids will also help with her lungs, which is why she is on a diuretic to help her pee. She still has a fair bit of edema (that's the fluids), but she is starting to look more like herself. They put in a PICC line yesterday, so hopefully they'll be able to remove an IV or two, and they have started her on some SMOF and will start some TPN this evening (nutrition via IV). She's still on skim breast milk with portagen, but a very minimal amount, this is due to chylothorax. I don't fully understand it. She hasn't pooped except for once, so we are waiting for that to happen.
Hoping and praying for more gradual improvements today
