CMN Trip in 2 days!

Bailey has been in rhythm for 15 days now! And no swelling! I'm hoping this might be the right combination of medicine and pacemaker setting that they were trying to find. We leave Wednesday for our Children's Miracle Network trip to D.C. and Disney World. I'm just very hopeful that we will all remain healthy - and our hearts in rhythm - throughout our trip. We're taking all our doctors' numbers with us, of course, and it's not like we'll be on the other side of the world. So, hopefully all will be good.

We fly out Wednesday to D.C. where we'll meet up with all the other CMN "champion" kids from every state in the nation, take a tour of the city, have lunch with the senators, possibly meet the president, and I'm sure lots of other fun things. Then, we'll fly to Disney World on Saturday where Tom will meet us and lots more fun. The girls (and I) are SO excited. Josie's a little afraid to fly, but she's being very brave.

I promise I'll take LOTS of pictures and tell you all about when we return!

Have a good week, everyone!

Angie

We're Home!

Cardioversion went well . . . and quick again. Yeah! That IV medicine they tried didn't get her rhythm fixed but it did make a difference toward the positive, so they're talking about adding that to her medicine schedule. But it lowers the blood pressure -- in fact, it got down to 70/40 last night -- so they'll have to adjust some of her other medications so her blood pressure won't drop that low again. They're working hard at trying to get the right combination to keep Bailey in rhythm. They'll find it. It just might take some more "tune-ups" at Riley before they find it. But they'll find it.

Now that we're home, gotta get laundry done! And I have one less hour to do it! Yikes!!

One of Bailey's nurses (without mentioning names . . . Amanda Kunzer) set her clock back instead of forward last night. She thought it was so sweet of the Heart Center to be calling her at 5:00 in the morning to make sure she got up. But they weren't calling for that - they were calling to tell her it was 7:00 and not 5:00 and to get to work! Ha!! We had fun with that one today. We concluded that just made her sharper than everyone else there today because she got an extra hour of sleep. Ha! Love you Amanda! And I really do love your haircut - cute! Hope to see all you nurses again, but not anytime real soon. :)

Love to you all out there!
Angie

Still out of Rhythm

The IV medicine, Cardizem, hasn't put Bailey's heart back in rhythm, but it has made the rhythm better. Dr. Hubbard popped in this morning and said she was going to do an EKG because it looked like it might have worked. And there are strings of normal rhythm, but then there are spots of flutter. So, sticking with the plan, she's coming in later this morning to try to use Bailey's pacemaker to get her back in rhythm. If that doesn't work, they're going to try to get the necessary staff here today to cardiovert. Josie and Riss spent the night with us here last night. It was like old times. Rissy said that if Mrs. Perry (her teacher) asks her if she did anything fun this weekend, she's going to tell her that we spent the weekend at the hospital. It's been great seeing our nurses again. This is a great place to be!

Have a great day everyone - it looks beautiful outside!

Angie

Another Irregular Heartbeat

Hm. Bummer. Bailey was at another orchestra event this morning (what a coincidence - I hope it's not her violin that does it!) when her heart went out of rhythm. Again, she wasn't sick, but she was very emotionally upset. One of the other girls in the orchestra made a very rude comment to one of the other boys about Bailey. You know how that goes! Well, as a mother, that didn't make me very happy to begin with, then to see the repercussions it had on her health . . . It just renewed my convictions I have always had about bullies. So, that's something else we have to deal with after we get Bailey taken care of. Anyway, lots of phone calls today with doctors and our nurse about what to do. We thought they might try to pace her out of it again using her pacemaker (last time was unsuccessful), but the plan was to to the twice-daily Lovenox shots (which are very, very painful) to lessen the risk of clotting, and cardiovert on Monday, but we got another phone call and they want us to come in and try a drug given through an IV drip to see if that will cause her heart to fall back into rhythm. For the life of me, I don't remember the name of the drug. Dr. Hubbard mentioned it on the phone, but I was on my cell phone and I can't hear too well on that thing. So, we're waiting on a phone call from the Heart Center so we can come in (probably overnight, I believe) and see if this med works.

I think we all need things in our life like this - things that make us drop everything and go in a different direction - just to help us appreciate those "normal" days. Normal is good. Normal, meaning the spats between siblings, the sound of a leaky toilet, the car sitting in the driveway that's in dire need of Mike's Carwash, the buds on the trees letting us know that spring is knocking on our door, the dirty dishes laying in the sink, the piles of clothes waiting to be laundered, the taxes waiting to be done, the neighbors finally able to take walks now that the snow is melted . . . normal is good. But these days are good too - they serve a purpose. They get Bailey's Team hopping to come up with a plan, and they just put things into perspective.

Life is good - the normal days and the not-so-normal days.

So, we're packed and ready to go at a moment's notice.

I'll keep you posted.

Love to you all out there! Hope your day is normal. If it isn't, I hope it gets normal very soon.

Angie

(Hey, Indiana Miller Family! Of course we remember you. I can't believe that Alex got a pacemaker too. That's interesting - kind of cool, actually, that they have so much in common. Maybe they'll meet again and hang out with each other sometime - sounds like they have a lot to talk about! It's good to hear from you again. Angie)

Cardioversion Went Well

Bailey's cardioversion went well today. It wasn't as difficult for Dr. Darragh as last time was (when he said he had to use quite a bit of power). She had so little anesthesia that he gave us the OK to go home 1 hour after leaving recovery. I was expecting to be there at least 4 more hours while she slept through her anesthesia and woke up to nausea, etc. We didn't leave the hospital until about 3:00, though, because we had to check in with Dr. Hubbard (Bailey's pacemaker doctor) so she could make a few adjustments and check things out. It was explained to us that the pacemaker gets a little confused when the heart beats our of rhythm. So she un-confused it and bumped the rate up a little bit more. That adjustment and some adjustments to medication that Dr. Darragh made are intended to make it more difficult for Bailey's heart to fall out of rhythm. (Danny, thank you for your comments - I'm praying for your cousin. I hope all goes very well. This world of cardiology can be pretty scary sometimes, can't it?! I don't know what a cardiograph is, but a cardioversion is simply a shock to the heart to get it beating in rhythm again. In comparison to all Bailey's been through, it's a relatively minor procedure. But we still have a hard time sleeping the night before!)

I'm tired. I think if I don't sign off pretty quickly I'll fall asleep at the keyboard. So, hope everyone had a great day. Don't forget to smile at the little things - that's what keeps us going sometimes. Happy Birthday, Tom - I love you.

Check back with you later.
Angie