Who needs the beach and picnics and fireworks anyway?

Well this marks the 3rd holiday that we'll be spending here at UVA. Valentine's Day and St Patty's Day being the first two (hey at least we got Easter out). We're working on 3 months in and 2 months out of the hospital for Miss Molly girl. A sad percentage, but one we hope to fix really soon.

We were working on discharge either Sunday or Monday. For those of you counting that's today or tomorrow. Well Molly had other plans. So we got moved to the general pediatrics area of the hospital to work on feeding. The docs also wanted a few more days to tweak her medications before going home. Molly was going strong on feedings, then about 3 days ago hit a wall. And the wall hit her back. She went from eating 80 to 90% of what they wanted her to to 25%. It was really sudden and getting her to eat was a huge struggle. She kept this on for about 36 hours. We began having discussions about putting the tube back in, which was depressing because she was doing soooo well.

Brian and I began thinking up every reason in the book why this could have happened. At the same time we noticed her heart rate had dropped across the board about 20 points. We weren't sure if it was the pacer modifications or what. We thought the eating issues could be teething, thrush, sore throat...

Finally the morning came (Saturday) that the cardiologist came in. This was one we hardly deal with being the weekend and all. When I started giving him my list of reasons why she might not be eating, he cut me off and said she was just a crappy eater and that we were going home with the tube. Not only did he tell me that teething was "a myth", but he also said if something was wrong with her heart beat being lower, she would look sick. Which she didn't. Smiling away as usual.

So the nurse brought in the tube and we were prepared to just deal with it. Literally 5 minutes before the tube was going to be put in, one of the docs comes in to say that they need to recheck a blood level because it came back really high and they were sure it was a mistake but needed to recheck for their records. Then about an hour later, the same cardiologist came in and told us the level was not a mistake. It turns out Molly's potassium levels skyrocketed from dehydration and as a result her kidneys were failing. They moved us back to the PICU and immediately began giving her fluids and stuff to flush potassium. Fortunately she started responding right away. After a day of this, we're happy to report that her potassium is down (now too low and they are giving her more potassium...seriously) and her kidneys are functioning again. And guess what? Her heart rate has gone back to normal AND she's eating again. And not just eating, but ravenously eating. Full feeds eating. So suck it doctor who blew me off and told me she is just a bad eater.

Of course the inevitable "will they make her too wet again" is an issue. And one we have been vocal about. We're hoping they just let us cut and run before something else happens.

In the midst of all this craziness, they stopped one of Molly's meds that is a bit hard on the kidneys. Last night they discussed putting her back on Milrnone (aka fucking Milrinone) if she couldn't go back on the enalipril. So they did bloodwork this morning to check her BNP to make the call about enalipril or not. This led to our best news of the day...to recap, BNP is a marker of heart failure. The higher the number, the worse the failure. While the numbers themselves don't mean anything specific, in general zero is best and the farther you get from zero is not good. Molly's was 3200 on admit. 15,000 post-surgery. 2500 a week ago. And now? 135! Yup. Not a typo. 135. We're not sure what this means as far as her function yet because they haven't done an echo in over a week, but it's a really good sign. Hopefully they'll do an echo tomorrow and we can see what's going on in there.

So the ups and downs and ups continue. I think Brian and I are the only parents who are happy to go back to the PICU from the general floor. Molly is now doing great AND we get our much comfy in-room bed back.

So Happy 4th. We hear that we'll have a good view of fireworks from our hospital room. Molly does like looking at lights so we consider it a win.