Safe on the Heart Center

Dear friends and family,

Bailey went out of rhythm last night (Wed.) again. She was having a hard time breathing yesterday at school - the fluid just hangs on - she's got quite the belly now. When she explains to me how it makes her feel (that she can't relax or sleep, difficult to eat, difficult to use the bathroom, hard to breathe), it's about equivalent to 7 months pregnant. She has just been miserable, but complains very little, so it's difficult to really get a good feel for how crappy she is feeling. But she was so sad and upset last night - she just wants to feel good again. She shares Dr. Darragh's frustration. (But let me make it very clear that she's not frustrated with her medical team - she's frustrated with her body right at the moment. She's the most positive person I've ever been around. She makes it nearly a joy to go through all this with her.) So we called Debbie M. (who has become pretty much our own personal nurse) and together with Dr. Darragh, they decided to bring us in this morning to be admitted. IV lasix is whittling away at the fluid, although I would like to see it disappear in a heartbeat, but even IV doesn't work that quickly. They didn't cardiovert her today because she needs to be out of rhythm for her cath tomorrow. They were going to have to get her heart out of rhythm anyway . . . Bailey was just trying to help them out a little. Ha!

She is feeling pretty good today and very optimistic that tomorrow goes well. Having been struggling with this fluid and rhythm issue for a year now, we, on occasion, have been allowing our minds to roam in directions that can cause a pretty good amount of fear. Dr. Darragh has given us no reason to think that "bigger" things might be going on other than "just" rhythm issues, but not feeling well for such a long time now, we naturally can worry about things before there is anything to worry about. So, we're trying to keep that under control. Prayer helps a lot! And friends and family offering their love and support helps a lot too. (Thank you, you guys! I love you!)

So, tomorrow Dr. Darragh is going to experiment with a pacemaker lead hooked up to the left side of her heart (she has 2 leads right now that are on the right side) to see if her pacemaker can put her back into rhythm. If it works, he will call Dr. T in (schedule a surgery - not open heart - within the next week or so) to add a permanent lead to her left side - maybe even 2 leads on the left side. If that doesn't work tomorrow, or if they find other issues with her heart function, we'll have to come up with another plan, but for now . . . we're hopeful that the lead works.

It's been nice to see so many good friends here at Riley today. Bailey had the best IV she's ever had today - our nurse Tracy did an incredible job! She's good. So many incredible people here making very good things happen. We're honored to be a part of the Riley family. No better place on earth.

Love you all, and I'll keep you posted.

Enjoy your night!

Angie