Thursday, February 17, 2005

What a good day!

Bailey felt so much better today than she has in such a long time. The documentary people came back to catch up on her progress. They interviewed her and asked her how she feels different now than before she had the Berlin Heart. She said she can breathe easier and it makes her feel better. They were also here to film an echo today and they asked her what this echo was all about. She said that during the echo they were going to turn the Berlin Heart down so that her heart is doing most of the work and see if the pulmonary pressure goes up or if it stays as low as it has been lately and, if it stays the same, that might mean she can go home with her own heart and, if it goes up, that might mean a transplant. You guys should have heard her explaining this to 5 adult men holding video and audio equipment. I just cried. She's incredible how she knows exactly what is going on at all times. Her understanding of everything is completely mature beyond her years. I'm hoping the medication they gave her last night to sleep (with a mild antidepressant) helped a lot because she wasn't nearly as fidgety and anxious as she has been. She smiled a lot today too (and laughed, Cindy!). This might not sound like much, but her friend Taylor Norris burned her a CD of some really cool pop songs, and she's been playing that all evening and even singing along! The singing along part is the cool part for 2 reasons: first, her spirits haven't been up enough to where she feels like singing; and second, her breathing has been pretty shallow and fast since surgery (which is normal for what she's been through) and singing was making her take deeper longer breaths. So, thank you, Taylor! She loves the CD and you're helping her grow stronger.

Oh, we don't know the results of the echo yet. The cardiologist's preliminary result is that when they turned the Berlin Heart down her pulmonary pressure went up "a little". They are going to look at numbers and review everything and talk with us tomorrow. So, we might know tomorrow (or at least have a better idea) which direction we are headed. Pretty unnerving, huh?!

The Child Life people made up a scavenger hunt for Bailey. One of the things on the list is for Bailey's doctor to sing his/her favorite song. Well, Bailey, of course, went after her surgeon Dr. Turrentine (he's the one that scared her and made her cry the first few visits we had with him). Obviously, their relationship has climbed to new levels. He was so embarassed - and this was in front of the camera crew when they were here! He was such a good sport. They joked back and forth over that for a long time and we all laughed hysterically at them. He even tried to pay her off for $100. Her response: "You wouldn't give it to me." She was being tough and holding fast. He left saying he was going home to practice and would be back tomorrow. He whispered under his breath on the way out the door, "The little terrorist." We had such a great time. Can't wait to see what he comes up with. He said he got kicked out of his 4th grade choir and it wasn't for behavioral reasons. Haha!!

They moved us 2 doors down to a bigger room tonight. Bailey didn't need to ride in the bed - she walked. (Can you just feel how proud I am?!) She even sat up in bed by herself several times tonight - she hasn't been able to do that until now. So now she can move around completely by herself - in and out of bed, on her sides, etc. She just made leaps and bounds of progress today. I'm so proud of her.

I miss you Tom, Josie and Rissie!! (Marissa has yet to visit Bailey because she's scared to put on a mask. But we're working on it. I sent one home with her to practice.)

Have a good evening, everyone. I have to go catch the rest of American Idol!

Love, Angie

11 Comments:

Blogger Aunt Debi said...

Bailey, Yea! for you I am so glad you had a great day. I loved hearing your voice last night on the phone and so did Uncle John and Ryann. I think you should make Dr. T. sing a rap or hip hop song for you...... Scott, Nancy, Angie & Tom you must be elated. Angie tell Marissa that Bailey's other Aunt Debi saw a Care Bears' show once and they were at the hospital wearing masks, do you think she will believe. Okay back to you Bails. I am going to give your phone number to Morgan, she is so excited to say hi to you she prayers for you everyday and writes you poems. Talk to you soon!
XOXOXOX Aunt Debi
P.S. I am the first to post and I am so excited.

10:47 PM  
Blogger Annette said...

This post was "music to my ears"!!!! Bailey - you make that doctor sing at the top of his lungs! I'm so happy for you - I'll keep praying that you get stronger and stronger every day!!!!

Angie - I guess Vickie told you that tomorrow is my last day at R&L. I'm going to miss you so much! We'll have to keep in touch, okay? Angie - I can just see the relief on your face as Bailey gets better every day. You have so many "angels" around both of you - I'm so impressed with the strength and love your family has!!!! I'll keep reading your messages and keep you in my thoughts and prayers!

Love,
Annette

5:47 AM  
Blogger Diane Roe said...

I was so happy to read the latest update, and to hear that the tuna casserole and cupcakes didn't make anyone worse. I felt like I should wear a "haz mat" suit when making them! I will not be able to visit today, but hope to tomorrow, Friday. Carol says we make our visits "for us" because it makes us feel better to see how strong you both are. We really miss Angie at R & L, and I am sure Sue will really feel your absence when she returns on Monday. We love you both. Diane

7:47 AM  
Blogger Aunt Debbie A said...

Bails,
I was so surprised to round the corner lastnight and see you walking down the hall towards me! I felt like tackling you and smothering you with kisses, but somehow I couldn't imagine you wanting that on film (the camera crew was filming you!) I cannot tell you how proud of you we all are...you are so brave and strong-spirited. You are "lion-hearted"! Maybe we should nickname you Nalla...wasn't that the mommy lioness on the Disney movie?

Whenever you start to feel a little uneasy about not knowing how long your recovery will take just remember that God is in complete control of every little detail. He's got your back!...and your heart, and your lungs, and your big toe... You get the picture! Every time I am tempted to worry about you God helps me to trust Him just a little more. And I can relax because I know that He loves you even more than I do. There is a Bible verse that you might know of that says that we should not worry about tomorrow for today has enough worry of its own. And that by worrying, we can't change anything anyway. SO all we can do is focus on TODAY. And you are doing a FINE job of that. I'll pray for you not to worry about "tomorrow" and you can pray for me to do the same. Next time I see you, you can ask me how I'm doing with that, ok?

The girls can't wait to come and see you now that you're out of ICU.

Ang - it was great to spend some time together lastnight. I am so proud of you, too. You are an incredible mom and an inspiration to all of us. I love you.

10:54 AM  
Blogger Lara said...

Good Job Bailey! It sounds like you're doing really good - and getting stronger everyday. Hopefully you'll get more good news today. So how was the "School of Rock" movie? Did you know there's a real School of Rock in Telluride, CO? (That's sort of north of Durango, which I think is where you visited) Telluride also has a Bluegrass Festival. You should check it out sometime! Keep up the good work getting healthy!

11:06 AM  
Blogger Nancy DeCamp said...

Wow! Moving to a bigger room! Tell them you want the Penthouse suites! Have you gotten your bike yet? I won't be able to get back up until sometime next week but I'm so looking forward to it. Angela & Andrea send their love and prayers. Angela is totally exicted about the film crew and the different "famous" people you have met or talked to. (Since she wants to be a famous actress, she figures any contacts you make might help her in her career! HA!) I really would like to see a tape of the doctor singing. It might make me feel better about my singing! Well - I hope to post again tomorrow before we go away this weekend. Take care you guys. I love ya! Nancy

2:03 PM  
Blogger Aunt Cindy said...

I can't wait to read the next update to see if Dr. T was able to get his act together for his singing performance. Bet he had a restless night anticipating that! Way to go, Bailey! You keep 'em on their toes up there! So I bet you are getting excited about your overnighter with your friend, Paisley. I am quite excited about it for you! Is your dad catering the event or just going to get his nails painted for the occasion??!
So apparently you like tuna casserole - you must be related to Craig! He will be sorry to hear that he missed out on sharing that with you. Adam isn't a big tuna fan, but he would have been glad to share the cupcakes with you, or the fried chicken your dad made. We will bring some surprises for you when we get up that way again, which will hopefully be soon. Keep working hard at getting better! You're doing a fantastic job! Can't wait to see you!!
Lots of love and hugs and kisses to you, and be sure to give Nancy a big hug and kiss for me!

3:31 PM  
Blogger Grandma Carol said...

Hi Sweetie! Wow! A singing doctor! Are you the lucky one? Not everyone has a doctor serenading them! Ha! I sure would love to hear your contagious giggle. That was sure nice of your friend to send you a CD to sing with! I know you are enjoying it. Here's another riddle: Why is a h orse half-way through a gate like a penny? Ans: Because his head is on one side and his tail is on the other side. Pretty good, huh? You keep those doctors on the ball, okay? Sounds like you're doing a pretty good job at it! Ha! You have a good rest of the day and PaPa and I will see you real soon! Love you bunches and bunches!

4:05 PM  
Blogger Aunt Cindy said...

Hi guys! I'm anxious to hear what's going on today - hoped you'd have an update. I've got Cortney's flu bug this week - coughing my head off - I promise to keep my germs to myself, though. Will see you when this is over. I'll bring you more special nurse pins - did you give the others away yet? I love you and miss you. Uncle David, Tyler and Cortney send their love, too.

8:34 PM  
Blogger Scott Needham said...

Hey Bailey!

I'm so glad to hear that you're doing so good! Man...you're going to be a world-famous heart patient....I don't know many people with their own film crew! It sounds like you're on the mend and finding time to have fun and THAT'S THE KEY! Keep up the good work....by the way....did you get your laptop working? If not, have your mom call me and I'll bring mine over so you can read all these great posts your mom has been leaving....and then you can read the hundreds of messages from your LEGIONS of fans!

Have a good night and sleep well!

9:52 PM  
Blogger Mary Ann Lucas said...

Ok Bailey...I have to ask....is this singing doctor single? is he cute? cause you know you have certain "friends" who are single cheering you on! We girls have to stick together you know! ha ha

So glad you are doing well. Your Mama is doing a great job keeping us all informed. I hope that you had another great day today. Think about you guys all the time!

Mary Ann (a.k.a. your Mom's single friend!)

10:16 PM  

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