Thursday, June 30, 2005

Inactive on the Transplant List

Today's echo went well. They changed Bailey's status to "inactive" on the transplant list. (They won't take her off of the list for potentially months, even if she goes home with her own heart.) PA pressure is right at 50, which hasn't gone down much since our stay in ICU. But Dr. Darragh explained to me today that what has been changing in the past couple months is the volume in Bailey's left ventricle. To go back a bit, the surgery back in January was to remove scar tissue that was lining Bailey's left ventricle (as a result of her heart defect, aortic stenosis). The scar tissue is what was keeping her left ventricle (LV) from expanding sufficiently to keep up with her heart. It finally just reached its limit and began causing problems. They removed the scar tissue in surgery, but they thought it might not have been enough to make a difference. So, she was listed for a transplant a month later when her LV didn't show signs of recovery. This is what they've been looking for on the periodic echos since then. Now, her LV is showing signs of recovery. The doctors just have to determine if it's enough to allow her heart to function effectively long-term. So, they are now going to turn the VAD down to a rate of 30 (beats per minute) over the weekend. They're doing another echo on Tuesday and, if things still look good, they're doing a cath next Thursday where they'll actually stop the Berlin Heart, increase her heart rate, and see how her heart functions under those kinds of conditions.

Bailey was really scared this morning before the echo. Dr. T came in and helped us out. She said she was afraid the echo would be bad news. Dr. T said there could be no bad news to come from this. Worst case is that we remain on the transplant list where we've been for 4 months now, and that's not a bad thing. Sure, it would be nice to go home with her own heart, but with that comes some uncertainties -- she could still possibly need a transplant at some point, and they would still be watching her very, very closely to keep an eye on things and make sure there are no signs of moving in the wrong direction. However, with that said, going home with her own heart would give us hope that she would fully recover. Wouldn't that be something?!

As you can tell, lots to think about and even lots to worry about, but worrying doesn't do any good and it takes away from the awesomeness of watching God work.

I'm starting to get mad at Perry (our pigeon). I've been trying to get a picture of him for months (literally!) and he just won't cooperate. I might have to come up with a different, less-flattering name for him . . .

I've finished our third afghan, and, yes, I've started a fourth. Marissa picked out yarn for a blanket for herself, so I've started that one today. She asked when her daddy was coming to pick her up and I told her he'd be here soon. She said, "Well, keep working because I want you to have it done when he gets here." She wasn't too disappointed when it wasn't done by her deadline. I just love the mind of a child.

"Thank you, Sue, for the Thursday brownies!" From: the nurses
(Don't worry! We keep a stash for ourselves, too. But I think the nurses are scheduling themselves to work on "Brownie Thursdays" now!)

Have a good one, everyone!
Angie

11 Comments:

Anonymous Anonymous said...

I will continue to pray for Bailey and Give God all the Glory for what he has and will do for her. Bailey has been such an inspiration to me. I enjoy the daily update and watching for new pictures. Keep the Faith. God Bless

Jim a 42y/o ToF survivor.

11:33 PM  
Blogger Sue Figert Meyer said...

A Song of Praise
I waited patiently for the Lord's help;
then he listened to me and heard my cry.
He pulled me out of a dangerous pit,
out of the deadly quicksand.
He set me safely on a rock and made me secure.
He taught me to sing a new song, a song of praise to our God.
Psalms 40:1-3

11:40 PM  
Blogger Annette said...

I am still amazed as this story unfolds. Each day brings new and inspiring news! I never imagined Bailey could go home with her own heart.....maybe it just needed some rest!!!!

I'm sorry Perry is giving you a hard time. I grew up in the city and was never a fan of pigeons - they were not very exotic and were pretty dirty. Since I came to Indy I still get excited when I see birds with color - robins, cardinals, bluejays! To me, it's another indication of what God can do! How else could they get those fabulous colors? I hope you can get a photo of him (or her) before you go home - it's Angie v. Perry! Who will win? Angie - you gotta outsmart the pigeon! I think basically they're scared of humans. Hmmmmmmmmmmm..............

I'll keep my fingers crossed for Bailey and pray that good news comes your way!

Love,
Annette

11:40 PM  
Blogger Alison said...

Bailey, you are still in my prayers everyday. This news was good to hear today. I am sorry you were so scared, I can't imagine going through what you are at your age. (((BIG HUGS))) sweetie!

1:29 AM  
Anonymous Great Aunt Robin said...

WOW!! I got major goose bumps when I read the last two pages! How cool is that to think this may be over soon. You are right Angie - God is awesome. Love you both.

1:44 AM  
Blogger Aunt Vickie said...

You know its amazing to me. We have such an awesome God, but yet when we can so clearly see his work we are surprised, astounded, thrilled.... I guess we lowly humans didn't think that keeping her own heart was His plan. Shows what we know. God is an awesome God, and we praise Him greatly for the work he has done and is doing in Bailey's life. In all aspects, not just the physical.

Let's keep up the prayers!
Love ya,
Aunt Vickie

7:04 AM  
Blogger Mary Ann Lucas said...

Hi my girls! How exciting and scary for you both! We have all been so humbled by your courage and willingness to let God work His magic on Bailey's heart and in your lives. I have no doubt that you both have made such an impact on the entire Heart Center staff at Riley. They now know why we love you so much! I think they are lucky to have had you in their lives for 5 months. I haven't mentioned the "HAPPY DANCE" for quite a while, but I'm getting warmed up and shakin' my bootie just a little to make sure it is ready for the big day!

I'm sorry that I didn't make it this week to see you, but I'm shooting for next week I promise.

I hope you have a great weekend and a HAPPY 4TH OF JULY!

I love you to pieces...Mary Ann

9:04 AM  
Anonymous Anonymous said...

I have been reading Bailey's pages for months now. It is so great to see such GOOD news! I have a daughter with Hypoplastic Right Heart who has to have a cath at riley next week on Friday. Hopefully we will get a chance to meet you in person. We love hearing about Dr. T as he is our hero as well. Stay strong and know that God is always in control.
God Bless,
Kimberly Utt
mom to soon to be 5
including one very special hearted little 5 year old :)

1:31 PM  
Blogger Lori said...

Wow, what news!! That would be wonderful if you could go home with your own heart.
Sorry, I didn't get to have lunch with everyone today, but I had to get out of there at 3 so I didn't feel right leaving for an hour. My lil sis had a baby on Monday, so I had to get home to cook for the family and go see them.
Have a great weekend and enjoy the fireworks.
Love and prayers,
Lori

3:46 PM  
Blogger Nancy DeCamp said...

Some things are just too much to comprehend. I'm glad God has everything covered! Kind of like a roller coaster at times - just buckle in and throw your arms up with your eyes wide open taking it all in. Thanks so much for being so diligent in sharing everything, Angie. Every day I am so grateful that you are my friend. I continue to learn so much from you and Bailey.

We got to see Tom and the girls at the summer orchestra concert. I ran up and gave Tom a hug because I was so happy to see them. Josie's group did great. I hope you got to see the video. She and Marissa have grown up so much over the last 5 months.

Well I gotta go. I hope you know we love all you guys! (and miss you tremendously) Talk to you soon.
Love,
Nancy

7:12 PM  
Anonymous Anonymous said...

Where have you been? I miss your updates.

11:37 AM  

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