I forgot to mention in my post yesterday about our exciting happenings last week with Zoe.  On Wednesday night we did Zoe's flolan medicine as usual like we have for almost a year now and tucked her in to bed.  We checked on her a few times and she looked great.  At around 10:30 we peeked in again before we went to bed and I noticed that her whole PJ top was wet and had blood on it.  Turns out the connection of the tubing to her central line was leaking Flolan and blood-  YIKES!  we called the company in charge of her PH drug and they walked us through a few different steps to try and get the pump running properly again.  Unfortuanatley, because the line had been leakign for at least a couple hours there was a blood clot in the central line itself and the medicine wasn't able to advance properly.  They had us call 911 because the flolan has such a short halflife- 3 minutes before it is out of her system.  Zoe looked great the whole time, her stats were great- she was more annoyed that she was woken up at 11pm.  The paramendics stayed for about 45 mintues and we talked through some of Zoe's issues with them and they gave us some tips on things to say to the 911 operator in case we ever have to do this again.  They were glad to meet Zoe and get a bit of her history- hopefully this will make every thing go more smoothly if we end up in the situation again.  Needless to say, Jason and I didn't get much sleep that night,  we were up every 30 minutes to check her line and make sure it was still running properly.  Zoe didn't know anything was wrong- thank god.  Nothing like a 911 call in the middle of the night to get your blood racing!!  After check in  calls with Zoe's cardiologist and PH nurse the next day, everybody said we did the right thing and that as long as she looked good and there was no more blood in the line, there wasn't anything to worry about.  One of the paremedics asked me if I was a nurse when we were talking to them about zoe- I guess that means I sound like I know what I am talking about- and that I have spent too much time in a hospital!! 

Zoe and her cousin Eva- riding trikes and few weeks ago

 


Zoe and her cousin, Max, "Eskimo Kissin Cousins" - a few weeks ago