7/16 Update

We've spent another few days on the roller coaster.  Yesterday, Patrick had an echo and a pH probe. During rounds this morning, the cardiologist said his echo showed that he had systemic pressure in his right ventricle, but it was lower than in the left ventricle.  (I have no idea how this is possible, but that's what she said). This was evident because he was only shunting left to right; that is, he was only sending blood through the hole in his patch from the left ventricle to the right ventricle.  This is very good, inasmuch as it means the right side is lower than the left. It raises a new issue, however--whether to close the patch. Because the right ventricle is already working at maximum, it can't really handle the extra volume from the shunting, which would suggest closing the hole. But, if they close the hole and the right ventricle pressures increase, he will no longer have the "pop-off" and the increased pressures could destroy some of the surgical repairs. So, they are thinking very hard on this one.  

In the meantime, they have maximized his sildenafil and are weaning him off the nitric. He's down to 4ppm now and they will leave it there overnight. Since Mira also takes bosentan, they are considering giving Patrick that as well, but they are waiting to see what happens when they finish weaning him from the nitric. They are also weaning him off the oral morphine.

On top of everything else, the pH probe came back positive for reflux. They were going to report the results to general surgery and decide whether to do a nissen or make his tube a GJ-tube, but we haven't heard back yet. Never a dull moment.

On the plus side, we took some time away for self-care and took Mira to the Detroit Zoo.  It was nice to get away from the hospital and feel like a family again. We are looking forward to going back with Patrick at some point.