Not the Best Outcome

Today didn't go the best that it could have. The pacemaker lead didn't work. They had to cardiovert (#14) Bailey back into rhythm. And he also found that her heart function wasn't any better (maybe even worse?). So, he stopped a medication (amiodarone) that was potentially causing the rhythm problems (even though it was supposed to stop them) and started a new medication (fleckanide - that's the best spelling I can give you right now - I haven't filled a prescription yet). It takes about 30 days to get amiodarone out of her system, so then they'll monitor her for a month or 2 or 3 or 4 to see if her heart function gets better which, if it does, would indicate amiodarone was the culprit. If, however, her heart function doesn't get any better or even gets worse, then transplant might become an issue again. Good news about that, though, is that Bailey's PA pressure is still good. That means she would still not need a heart and a lung - just a heart.

Bailey was disappointed. The first thing she asked when she woke up was, "Did the pacemaker work?" It absolutely broke my heart to have to tell her it didn't. I really didn't think any worse would come out of my mouth, but I managed to force out a "no". She started crying. But then, after she woke up pretty good and everybody left for the night, our wonderful and incredible nurse Debbie (our transplant coordinator back in the Berlin days) popped in and made us both feel better. Bailey had lots of questions for her. She's (we're) still scared, but we have to take one day at a time. She's laying flat and can't sit up or get out of bed for another 2 hours. That's kind of getting on her nerves, but we have one of our favorite night nurses tonight, Trina, and that helps.

Well, wish I had better news, but "it is what it is". That's our new motto. Nothing more, nothing less.

Love to you all! We're hoping to go home tomorrow and get to enjoy a little bit of this holiday weekend.

Take care,
Angie