Wednesday, February 28, 2007

Cardioversion Tomorrow

Dr. Darragh tried his hardest to pace Bailey's heart back in to rhythm (by making special adjustments to her pacemaker), but it just wouldn't cooperate. The worst part is that she had to have a lovenox shot before we left the hospital and has to have another one in the morning before they do her cardioversion around 10:30. Bailey's looking over my shoulder as I type this and she said, "Lovenox! Yuck!! See that word "love" in there? That should be something else. They should spell it with a "l-u-v". So, we've decided the name should be changed to "Hatenox". Lovenox is a shot that keeps her blood thin to avoid clotting while her heart is out of rhythm. I've never had one, but she says it burns really bad when the medicine goes in. She says it feels like someone is pinching her and not letting go for about 10 minutes. I agree. It should be "Hatenox".

Have a good night everyone!


Out of Rhythm Again

Good morning, everybody. Bailey's been doing really great this week - she's lost 8 pounds of fluid and has more energy then I've seen in months. Last night, her orchestra performed on the concourse at the Pacer's game at Conseco Fieldhouse and sometime during that evening, her heart went out of rhythm. She had taken her afternoon lasix dose and had to "run" to the bathroom. She said she felt really good running (the pacemaker kicked her heart rate up to where it was supposed to be), but her heart started jumping around and didn't stop. That happened before the evening started. The school buses had just arrived at Conseco. I didn't even know about it until after their performance right before the game was to start. She was a little scared, although feeling really good still, so we decided to go home and check things out. Tom stayed at the game with Josie and Marissa. So, we called our own special nurse, Debbie (actually, I'm quite positive she has other patients besides us, but she makes us feel like we're the only one - she's wonderful!). We're going in today to see if they can use the pacemaker to correct her rhythm. That's the plan - trying to avoid cardioversion. Keep your fingers crossed for us!

Last night, we had the distinct pleasure of visiting with Donnie Walsh again. What a wonderful man. He's so sweet to take time out of his evening to sit down and talk with us. He visited with us 2 years ago when Bailey's team of doctors took her to the Pacer's game while on the Berlin Heart. Mr. Walsh played an integral part, financially, in getting Bailey's Berlin over here, so it meant a lot to him that he could actually meet a family that he has helped. And, boy, did he help! Without the Berlin, who knows where we'd be today. He was so happy to see her so healthy and unattached to the Berlin. What a great night, and what a special man. It was so special to be able to thank him again for his part in keeping our family whole. Thank you, Mr. Walsh!

Below are some pictures I thought you might enjoy.

Have a wonderful day everyone, and I'll report later on our visit at Riley today.


Miss Lanigan hands over the baton to Bowser who tries his best to lead the orchestra - pretty nice job, Bowser! Especially liked the hip wiggles!

Bailey and Paisley - 2 peas in a pod!

Bailey and Aunt Cindy - she accompanied (piano) Bailey's violin solo and helped her win a gold!

The neighbor kids having a blast in the snow - Marissa was having a blast too, I promise! (L-R: Josie, Marissa, Makayla, Matthew and Corey)

Rissy wins grand prize with her 100-day poster -- 100 cupcake papers.

Bailey and Donnie Walsh before the Pacer's game v. Suns.

Saturday, February 24, 2007

Alex gets a heart!

Hi everybody! We have a new reason to celebrate. Our friend, Alex Wood, a 9 year old boy in Florida on the Berlin Heart, got a heart 5 days ago! He's been in the hospital since mid-August, and on the Berlin Heart since late September. We've had the pleasure of keeping in touch with him and his mom and family. It's been a long wait, but he finally received a heart from a 16 year old girl who lost her life in a car wreck. I'm so grateful for the donor's family in making the decision to pass their daughter's life on to someone else in need. Without them, Alex would still be waiting. I cannot imagine the devastation, sleepless nights, and lonely days her family feels and will, no doubt, continue to have for many years to come, but hopefully they will think about the good they have done for another family and will cry tears of joy.

When Bailey and I took our trip to Germany to visit Berlin Heart, they asked Bailey for only one thing when she returned home. That one thing was to speak out for organ donation - to ask everyone to choose to be an organ donor. Klaus took out his donor card and I took out my driver's license and pointed out the little red heart on it. We were each very proud to have let the world know that we want to reach out to and help families on the brink of devastation. What an honor to be in that position. If you haven't noted on your driver's license to become an organ donor, please think hard about that. I am so grateful that Bailey didn't have to have one 2 years ago, but who knows what the future holds. Who knows? It might be you or I waiting on an organ - it doesn't just happen to "sick people". Please make the decision to be an organ donor.

These past 2 months have been difficult for me. As you know, Bailey was cardioverted out of an irregular heartbeat back in December - just before we left for Germany. Ever since then, she has gradually taken on extra fluid around her belly. Dr. Darragh continued to tell us that her heart function was good and her PA pressures were stable and that nothing dire was going on. He had to increase her medication that helps keep her heart in rhythm until the time was right for her to get her pacemaker, and the thought was that that medication caused her fatigue and swelling. So, after her pacemaker was put in, I had high hopes that the fluid would just disappear rapidly, but it, in fact, kept getting worse in the following 2 weeks. Her lasix dose was even doubled, and she still continued to gain fluid. Finally, Tom whispered to me one evening last week that he thought Bailey looked like she did in the documentary (when she was in heart failure and had gained nearly 1/3 of her weight in fluid). That didn't really startle me too much, because I had already been startled over the past 2 months. After one more weigh-in showed she had gained about 15 pounds, I took Bailey in to see Dr. Darragh. He did some tests and adjusted some medicines. Dr. Hubbard, our new pacemaker doctor (we really like her too!) adjusted her heart rate up to 75 beats per minute. It was originally set at 70. And Bailey's heart rate before pacemaker was right at 60. She said that sometimes the smallest adjustment can make a big difference. I have to say that she nearly immediately felt better. She was falling asleep in the pacemaker room and said she didn't have the energy to walk to the van. She had plans of sleeping in the van on the way home, but she wasn't tired anymore. And that evening, she had noticeably more energy. Since that day, 8 days ago, she has lost 6 pounds! Things are looking up! She has more pep than she has in months. It's weird to me that I found it very difficult to even think about writing an update on her swelling these past two months, when I wrote every day for 6 months in the hospital. It's only now, after things are looking up, that I feel like I can let you all know what we've been going through. If it had been something dire, I would have written, but I guess I just felt like crawling in my cave to pray.

We have also experienced a loss of someone very dear to us. You might have seen it in the newspaper. Our friend, Buddy McAtee, passed away 2 weeks ago after a battle with cancer. He was the producer and creator of the documentary, and a brother of Dr. Cox, Bailey's infectious disease doctor who has become a very close friend. What a sad time. And what an incredible man. He and his wife, Judy, have done great things for the IU Cancer Center and Riley Hospital. We are deeply saddened by his loss and deeply saddened for the Speedway guys and Buddy's family. I pray that God will bring them peace through this difficult time, and that Buddy's legacy will live on and that the documentary will do great things for children and pediatric medicine.

I was privileged to attend the Go Red for Women luncheon at the Westin Hotel downtown yesterday with my good friend, Mimi, and her mother. I had a great time. Hundreds of women came together and the crowd was a sea of red. It was beautiful! Red roses as centerpieces and red dresses, blouses, sweaters, lipstick, fingernails, shoes, purses, hats, coats . . . there was red everywhere. Go Red for Women is a movement to make women aware of the risks of heart disease. I'm not good at remembering statistics so I can't even begin to pass them along to you, but I do know that heart disease is the number 1 killer of women. And it can be prevented by taking action to take care of yourself. I decided about a month ago to begin eating healthier. I think what opened my eyes was waking up one morning starving for breakfast, and I went straight to the brownies. Then for lunch I had another brownie and for dinner another. I suddenly couldn't get enough sugar. I was eating noticeably more sugar than I ever had before and feeling very fatigued in the evenings - so much so that I could barely clean up the dinner dishes. I was so exhausted. And I get grouchy when I'm exhausted. It wasn't pretty. So, fortunately, our office started signing employees up for a "Biggest Loser" competition with other law firms in the city. I wasn't interested at all since I don't consider myself overweight and in need of losing pounds. But one email came out that said, "Even if you don't have any pounds to lose and just want to start eating healthier, sign up!" So I did. Yes, I got a bit of grief from a fellow employee as she rolled her eyes and said, "What are you doing this for, Angie?" I said, "I just want to start eating healthier." And she actually said, "Well, it looks like you're showing off." That took me a while to get over. In fact, it still hurts. But it hasn't stopped me. I'm still in it, and I'm doing fine. I purchased the book "You: On a Diet" and learned a lot about how junk food affects your body. Basically, your body doesn't even recognize it as food so it thinks you haven't eaten. That's why you can eat so much of it. And I learned that not skipping meals is better for you than, say, not eating breakfast, or fasting, because eating consistently keeps your metabolism going. When you skip meals, your body thinks you're not going to be eating anytime soon, so it begins to store more fat. So when you do finally begin eating, it's still storing more fat away and you put on more pounds than you even had before. Very interesting I thought. So I've been eating breakfast every morning, watching my portions - I still get full - snacking healthy on veggies and nuts, and I have finally done the unthinkable! I've began drinking water. I am NOT a water drinker. And I am taking baby steps. I've been drinking 12 oz. in the morning and 12 oz. in the afternoon. Yeah, that's it. I'm hoping to work up to another 12 oz. glass in the evening, but I haven't gotten there yet. And I haven't tackled exercise yet. Before all this snow started, I did get out in the neighborhood and mapped out a 30-minute walk. When the weather gets better, I'm having visions of 30-minute walks. Maybe not every day but hopefully 3 times a week. And the best part is that I don't feel like I'm "on a diet". I'm just breaking habits and taking one step at a time to move toward a more healthy lifestyle. I'm going to do my part in staying around long enough to watch my children grow old. I enjoy them too much to let that slip by. I encourage everyone out there to take baby steps toward a more healthy lifestyle and heart-healthy lives.

Speaking of my children, they are so sweet. I have the best girls in the world. Bailey is the most courageous kid I've ever seen. She's embracing her pacemaker - she's even found a club to join on the internet for people with pacemakers. She won a gold medal with her violin solo a few weeks ago. And she just signed up for the most challenging science courses in high school in hopes of becoming a nurse, or a cardiologist, or a heart surgeon at Riley. Pretty cool, I think.

Josie has such a sweet and caring soul. She takes incredible care of her bird, a cockatiel named Mickey. I never knew a bird could cuddle, but he cuddles with Josie. It's the sweetest thing. He just sits there on her chest in the middle of a blanket with his eyes closed while she rubs his head and back and kisses on him. So sweet! And she has rekindled her love for basketball. She just finished up her league season - they played in the championship game and lost by 12 points. But her coach really helped all the girls develop a good team. He is just what she needed. She has taken some unfortunate verbal beatings from her coach in the past, but this coach was exactly what she needed. Josie learned more this season than she ever has playing basketball. He pointed out things the girls needed to work on, explained things where they could understand what he was trying to tell them, and, yes, he got frustrated and even yelled at times, but he talked WITH the girls and didn't just scream and yell at them and make them feel like they were worthless. She now wants to try out for the middle school team next year. I'm so grateful for Coach Cox - we need more dad-coaches like him.

And Marissa. What an imagination. She loves to help me around the house and, at the same time, loves to trash it out with papers laying everywhere - papers that she has handed out to her imaginary students in her imaginary classroom. She used to have only 4 students, but now her class has grown to about 25 students and that means 25 piles of paper everywhere. We're working with her on cleaning up her "classroom" when "school's over". When Bailey was scheduled to get her pacemaker the next day, Josie didn't want to go to school - she wanted to go to the hospital with us. So, we decided that would be ok. Marissa heard us talking about Bailey having surgery again, so she walked up to me and whispered, "Mommy, can Bailey die tomorrow?" Fighting through the flashbacks of those same talks we had 2 years ago with quite different answers, I said, "No, sweetie, she can't die. It's just a really quick surgery and we'll be home the next day." She said, "Oh, ok!" and ran off to her students.

After all our family has been through, I am extremely proud of the girls. They still fight like sisters, but that even warms my heart because it means we're all still here and we're "normal". There was a time not too far back when I wondered if we would still all be here. Life is incredibly good.

I hope all is well with you! Congratulations Alex! We're so happy for you!
Love you,

Wednesday, February 07, 2007

Pacemaker Procedure Went Well

Hi everybody! Bailey's surgery went well today. She didn't like the anesthesia much and she struggled with it through recovery a little bit, but she's feeling much better now and up and walking around. We'll be here overnight at least. Josie's been with us today - she's enjoyed being at Bailey's side through all this. Such a sweet, caring and supportive sister. Rissy was happy going to school today. She came up to me last night and asked me "Can Bailey die in her surgery?" I said, "No, honey, she won't die. This will be really quick and easy." She said, "Ok!" and ran off and went to bed. And she kissed us goodbye this morning when we walked out to go to the hospital. She loves school and loves her teacher, and she simply believed that Bailey was going to be fine and well taken care of. We expect her and Tom to pop in any time now. It will be good to give them a hug.

They're setting up for the radiothon downstairs - it starts in the morning. It will be fun to see our WFMS friends again! And don't forget to listen Friday from 4-5:00 when Bailey will be on with Mimi and J.D. And, most importantly, don't forget to call in your pledge!

Love you all!

Friday, February 02, 2007

Pacemaker Rescheduled

Bailey's pacemaker has been moved up to Wednesday, Feb. 7.