Day 13

The hardest part about all of this is the unknown, and allowing ourselves to be too optimistic as a result. Yesterday, we were feeling really good about Erin's chances for coming home in the relatively near future. Today, that possibility doesn't seem so imminent.

Over night, after Erin's Milrinone was reduced to zero, her blood gases turned acidotic. That indicates that she isn't getting enough oxygen to parts of her body, and lactic acid is building up. To combat this, the doctor's made the decision to resume Milrinone at .5 (she had been weaned down to .025 yesterday). She will now remain on the Milrinone through the weekend, and we won't attempt to wean her off oxygen until next week.

Unfortunately, now her oxygen sat levels are decreasing, hovering in the mid-70's. There is some mild concern among the doctors about how she is doing today. We are here for at least another week.

Yesterday, I got on the elevator and someone was talking about their child. She was mentioning that they are struggling, but at least they aren't on the 8th floor (the NICU, where Erin is). She looked terribly guilty when I hit the button for 8. I felt bad for her. It does get discouraging, but I am constantly reminded just how good we really have it. Erin has something that is serious, but hopefully even if she deteriorates further, can be helped to the point where she can lead in a reasonably normal life. All I need to do is to get on the elevator, or walk through the lobby, or even the parking garage, and observe parents with their children that are far worse off. Someone yesterday asked a mother on the elevator how her daughter was doing. The mother replied "Pretty well. We got to bring her home for a day last week." Yesterday, I saw a father wheeling his toddler son to the parking garage in a wheelchair. The boy couldn't have been more than 2, and looked like a cancer patient with his hair falling out. He was so damn cute, and was obviously suffering so much. It just about brings you to your knees to see what others are going through.

So today is discouraging, but there is always an upside. After all of this, we can't help but develop an even stronger bond with Erin. Sheila and I have always had an exceptional relationship, but are even closer as a result of all of this. There is always a silver lining, if you are willing to look hard enough.