Its amazing how we can sit here minute after minute, waiting for the inevitable, planning for the end, but still think about Mason's medical condition and talk about how his electrolytes are doing and whether or not he needs the nitric oxide. Unreal, though it may be, that's some of what we've done today. Mason continues to hang in there with saturations all over the map on 95% oxygen concentration . He is sedated pretty heavily and sleeping much of the day. When he wakes, he is somewhat frustrated that he can't move as he wants to, so he bears down and doesn't let the ventilator breathe for him. This always leads to lower saturations and leaves us watching the numbers to see if they will come up this time, too. If there is any hope, he has to be able to wake up and move without desaturating. Impossible situations.

Over the weekend, the intensivist stopped Mason's potassium chloride for fear that his potassium level was climbing and might get too high. We disagreed knowing that his potassium was actually fine and was leveling out because of the supplement, but didn't really have a say. We knew that they would restart it because his chloride would go too low, we knew that they would restart it because his potassium would go too low, but we have little fight for those types of things. At this point, we can say it was just frustrating, but what we really wanted to say then was "What a stupid idea! Please stop 'taking care' of our son, because you clearly don't know how to do it." As we knew they would be, now that the supplement has been restarted, Mason's electrolytes are back to "normal." Plus, that doctor won't be around for a while, so we're safe for now.


We have made a decision to turn down the Nitric Oxide a little bit today. You might remember this is a gas that helps to dilate Mason's blood vessels and allow his heart to not have to work so hard to get the blood into the lungs to be oxygenated. You might also remember that Mason is on Viagra which does the same thing, so turning it down will hopefully effect no change. Our idea, along with the attending intensivist this week, is to remove things that are doing nothing to help Mason along. More medication is not always good, especially if it does nothing.

We continue our vigil taking care of our son as best as we can. We pray for peace and comfort for him as well as those who love him.