Wednesday, May 25, 2005

Another Echo Today

Another echo today - this one more in-depth - but all still seems well. I think the cardiologists and the surgeons are in the midst of discussions regarding whether or not Bailey benefits from the increase in VAD rate. They turned the rate up to 120 beats per minute and extra beats started again. So they turned it back down to the 100 beats per minute that it's been on since the weekend. It's really strange to watch the echo screen and see her heart beating at 60-some beats per minute but the Berlin Heart pumping twice that rate. It's an incredible thing what they're doing here. I am constantly in awe of the medical staff's abilities. But even beyond that, their ability to emotionally take care of us is incredibly impressive. Definitely the best I've ever seen or heard of. Thank you, Riley!!

I got to leave for a couple hours today to see Josie's awards ceremony at school. I'm so proud of her! She got lots of awards - honor roll, super citizen, outstanding student, art, music, and lots of others I can't even remember at the moment. I think the only one she didn't get was perfect attendance. Way to go, Josie!!

Marissa had a softball game tonight. I didn't get to go, but she said she didn't bat again (she's too scared). But she had fun! She fielded a ball and threw it to first base. She was very proud of herself . . . and so am I!

Dr. T tried to come in our room today when the curtain was drawn and Bailey was sitting at her bedside toilet. There was lots of commotion going on, so I met him at the door when he was asking if she was about done. I told him, "No, I think she needs a magazine." [Of course, Bailey was yelling at me in the background for saying that.] After we stopped laughing, he said, "Well, I can't wait around for THAT. I have work to do." So he left and came back a couple hours later to cycle her machine. (That simply means he logs in the computer, confirms the settings, and logs back off.) When he walked in, she said, "Can I do it today?" (She's only seen it . . . let's see . . . about 100 times. In fact, one of Dr. T's people came in over the weekend to do something with the machine, and he didn't remember the password. Bailey informed him what it was. He simply said, "Oh, thanks.") Anyway, he stood behind her while she cycled it herself. He said, "Good. Now I don't have to come in on the weekends."

All is going well. Just hanging out waiting on a heart. It's good to hear from everyone! Thank you for keeping in touch and praying for us. It will happen when the time is right.

Catch you later,
Angie

(P.S. Hey, Bubba, CONGRATULATIONS!!!! I am incredibly excited for you guys! Big, big hugs to both you and Stacey!! - And I laughed hysterically at your comment. I miss you, man.)

6 Comments:

Blogger Annette said...

Hi Angie and Bailey! I'm getting ready to go to bed but I wanted to see if you posted for today! It's great you could go to the award ceremony! Isn't it great to see your kids achieve things!!!!

Guess what Angie - I ran into Elliott tonight at the supermarket. I haven't seen him since I left - I really miss everyone so much!

I'm praying for you that this is THE weekend!!!! With so many people out here praying for Bailey, it has to come soon! You know there's a plan and it just has to happen!

Love,
Annette :)

10:40 PM  
Anonymous Anonymous said...

Good Morning Angie and Bailey,

Sorry I haven't made it by this week. Talked about you on the radio yesterday (hope that was o.k.) Hoping my bracelet will be done in time so I can show it off at the telethon (ha ha) Love you guys...Jim and Corbin send their love as well.
Mimi

4:52 AM  
Blogger Diane Roe said...

Angie and Bailey: Hard to believe it was January (barely) when you began your time at Riley. We all miss Angie so much here at work. Things just don't feel "right" with you gone from our little "social circle". But, we are THRILLED for Scott and Stacey. They are such super people , and I'm sure they'll be great parents. I hope they keep us informed, because we miss Scott, too. Jennifer and I were remembering a really special lunch at the Athaneum just before Christmas with you and Scott, and how much fun it was. Hard to beat!
Take care, both of you Love, Diane

6:51 AM  
Anonymous Wendy said...

Hi just one of your readers following Baily's journey. you always manage to bring a smile to my face. Baily is such a sweety.

I'm the mom of three boys the oldest Andrew, has a chd and will be having surgery next month to replace his mechanical valve. He is 15 now.

I am keeping you in my prayers and hoping Baily gets her heart real soon. Thanks for sharing your journey. You are an inspiration for many of us out here.

Wendy

10:37 AM  
Blogger Nancy DeCamp said...

OK - so I was going to come up today (Thursday) but I didn't want anyone thinking I was just coming up to somehow "bump" into a certain actor! So to show I am genuine I will wait. Ha! Actually I had to take time off for Andrea's awards day today. Both the girls ended up on honor roll this entire year. That has NEVER happened. I was so happy and proud also to hear of Josie's awards. And, I can't wait to see Marissa hit a home run! I know you have to be so proud of all your girls. They are a reflection of the love and guidance of their parents! Andrea got a base hit last night. It was exciting. Two outs, two on base and a full count, then WHAM! it flew up in the sky out to right field right to an open spot! She was so surprised when she hit it that hard that she hesitated before she ran. It was great. I'm not sure if I can get up before the weekend, but I am with you constantly.
Forever friends,
Nancy

1:09 PM  
Blogger Sue Figert Meyer said...

Angie & Bailey,
Sorry to find on my visit Thursday evening you were lights out with a bad day. Left my usual and an envelope in a grocery bag with the nurse. Hope you get some rest. I sent you an e mail today. Are you still able to check R & L e mails with our new system? There will be lots of prayers this long weekend. Keep your expectations low. I'll ask God to hurry it up!! Try to enjoy the long weekend. We all miss you here at R & L. Sue

8:37 PM  

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