Okay...so I now realize part of the reason they took her off the vent was to help her right ventricle. As you recall, this poor ventricle really got a work-out in utero - it is thickened and stiff now. Being on the vent doesn't help it relax, which is what they want.
She is still on the nasal air thing (sorry that's all I can remember to call it right now). That can also make the ventricle work harder. But, she needs to be on it.
However, last night her stats dropped and they did an x-ray [they do one every morning - myers]. Her right lung pockets are closed [only a lower part of her right lung. Perhaps a 1/8 of her lung -myers]. To hopefully open them they need to put her back on the diuretic as there is fluid they know building back up (not good for heart or kidney either).
Also, they do "chest pts" where they have a tool that they tap her with to try to get them to open. However, the nurse has not really been able to do it because she gets too upset. Getting to upset is not good for her right now. They are keeping her a little sedated to help (but not too sedated as that is not good for blood flow). [I was able to do it this afternoon for about 10 minutes - myers]
Her latest gas showed that all their efforts to keep her off the vent are not getting her where they want. She is a little bit worse as of the last gas. They will decide momentarily. Pray.
I knew steps back could happen. But we have been kinda spoiled. This is hard.