Friday, August 31, 2007

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,

Thursday, August 30, 2007

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!


Monday, August 27, 2007

Air Show and Cardioversion #13

Bailey was invited to share her story at the Mt. Comfort Air Show this weekend, and she did a great job! She only had 2 minutes to talk, so they suggested she write it down on paper so she wouldn't go over, as the air show ran on a very tight schedule. She did really good! You would have been proud. She climbed up to the top of the announcer's tower and they paused in the middle of the show to hear her story. She started to get really nervous when we climbed up there and actually saw the sea of people in every direction. Really incredible how many people were there. But she did a great job!

God was definitely looking after us yesterday. Bailey wasn't feeling very well - she's accumulating fluid around her belly again - so we were very grateful that every time we turned around there was a golf cart waiting to give us a ride. So we hardly had to walk at all and Bailey was appreciate of that. The foundation got us in to the Blue Angels tent for shade, food and drink -- that was very refreshing. We had a great time hanging out with Dr. T. He knows a lot about planes! I already knew that, but he was pointing things and people out to us that was really pretty impressive. Unfortunately, Bailey wasn't feeling well enough to stick it out for the whole show, and Josie wasn't feeling too good herself, so we ended up leaving before the Blue Angels few. But! Dr. T told us about the live feed that Ch. 13 had on the internet, so after we got home, we tuned in and saw the Blue Angels on our computer. Very awesome! We really enjoyed listening to the Navy guy (sorry! I'm not knowledgeable at all in titles) narrate their show. He was very entertaining himself. And we got to listen in on the pilots for a little bit. And - they played GREAT music. It really was neat - it was definitely the next best thing to being there live.

Then we got home, and Bailey discovered she was out of rhythm. This time, she didn't know it. Dr. D thinks (and I definitely agree) that she'd been out of rhythm for a few days. She just hasn't been feeling well and the fluid has been increasing pretty rapidly. So, we went in this morning for cardioversion #13. All was successful. And they scheduled a cath for this Friday to see if they can make some decisions on what to do next. They're specifically going to look at her pacemaker and see if they can hook a lead up to her left atrium so that when she goes into flutter, the pacemaker might be able to correct it right away -- maybe even without her knowing anything about it. At least that's my understanding at this point. I'll keep you posted. Bailey's pretty scared - actually has been for a while now. Our minds just start wondering all over the place and it's easy to find ourselves near panick. But our faith keeps us going. She's an incredibly strong and positive little lady, you guys. To see things finally start getting to her makes me a little sad. But together we'll get through this. Hopefully we'll get some answers on Friday.

Please pray for Bailey's cath for us. We're gonna be pretty scared, but trying not to be.

Thank you for hanging in there with us!
Love you all,

Friday, August 17, 2007

Successful Cardioversion

Cardioversion was successful today. Bailey's feeling much better and enj0ying "High School Musical 2". They bumped her pacemaker rate up to 90 beats per minute, which is as high as they will go. They say they've known some patients whose "magic number" is 90. Maybe it will be Bailey's too. They're having a "pow-wow" next week to discuss other options to keep her from going out of rhythm. I hope they come up with something. She is such an incredibly strong young lady. Her spirit is always an inspiration to me - it helps get me through my less stellar days.

I just love all 3 of my girls. They are all enjoying their new school year - they love their teachers and their classes. Marissa's teacher called me tonight to tell me how she is such a sweetheart and she's really looking forward to having her in her class this year. We talked for a while . . . such a sweet lady. And Marissa really likes her. Riss is having a friend sleep over tonight for the first time ever! She was SO excited! I was afraid the hospital might flip our plans upside down today, but we were home by 6:00, so all went as planned. Bailey had Paisley over, and Josie has 3 friends over. They're all sitting in the living room right now with all 8 pairs of eyes glued to the TV. Tom's in Fort Wayne on a golf trip with his friends, so it's a girls night!

Well, I'm gonna go eat a Twinkie. They have always been my weakness . . . those and Mountain Dew. I'm drinking Diet Pepsi at the moment, so that gives me "room" for a Twinkie.

Enjoy your weekend everyone! The weather here in Indy is supposed to be gorgeous and much cooler than the last several weeks of the 90's. I just might be able to get out and work in my yard!

Love to all,

Thursday, August 16, 2007

Cardioversions #11 and #12

My computer's been down, so I haven't been able to post until tonight. Cardioversion #11 took place earlier this week on Monday, the day before school started. Bailey got 3 days of school in, and she's out of rhythm tonight. She's been swelling in her belly the last 2 weeks. It's starting to look like she goes out of rhythm shortly after the swelling occurs. I don't know. Just grasping for straws trying to find some pattern to this all. She's feeling good, it just scares her when she swells -- Tuesday evening she gained 3 pounds just that afternoon and evening. It is scary stuff. Dr. D is still thinking it's medication. He thinks her blood pressure was too low, so he cut back on her BP medication. (Her BP was low 60's/40's.) Her white count was down last weekend and blood work was showing that her kidneys weren't working perfectly. That was before the BP med change, so hopefully things are on the upswing again. Trying not to cross that line from worry to panick. They keep telling us that they're not concerned and it's just tweeking medicines. We've been hearing that for about 9 months now and sometimes I find myself allowing not-so-good thoughts to creep in. I start praying and they go away for the most part.

Tom's out of town on a golf trip and the girls have all invited friends over to watch High School Musical 2 tomorrow (Fri.) night. We're hoping that Bailey feels good enough to go to school in the morning (she just can't eat breakfast or lunch because we have to be ready to go when they call us and are ready for us) and hoping we can squeeze in a cardioversion after school but before H.S. Musical. That's not asking too much, is it? I think they should consider building us a drive-through cardioversion. My vacation days for the year are long gone, and now that school has started up again . . . that might just be the answer.

I'm tired. I have to go to bed and see what tomorrow brings. Please pray for Bailey.

Good night everybody!