Monday, February 07, 2005

Sat Up For The First Time Today

I came back from lunch and Bailey was sitting in a recliner in her room! They were changing her bed to a more comfortable one, and she took a few steps to the recliner. She sat there about 20-30 minutes when she said it was hard and she wanted back in bed. The VAD is taking some getting used to. She doesn't want to see it, but I see her peeking when they change her dressing twice a day. I got to tell her today that we met the German doctor who brought the VAD over and showed her his business card and the picture we got of him. (I'm trying to figure out how to post pictures on here. I'm not sure how to get it from my memory stick to the blog page.) She's drinking really well, but not much hungry anymore. The doctors are trying to "put the puzzle pieces together" now that she's off the ventilator and feeling much better. She, once again, is "one of a kind". Her PA pressure was in the 40's last week while on the ventilator but has been in the low 100's the past two days. They made an adjustment on the VAD this afternoon (did an echo and said the right side can take more, so they increased the flow) and the pressures have fallen steadily into the 70's. That makes me feel much better. But I won't be surprised if they go up again. They are talking of weening her off the nitric oxide (a gas that keeps her PA pressure down) - also, interesting to note, this is the first time they've given nitric oxide through a mask - they always give it through the ventilator tube. They've apparently given it via mask to adults, but, once again, Bailey is just barreling through uncharted territory - she seems to gravitate to that kind of thing. She's a miracle baby three times over!

She's beginning to converse with all the medical people that come in and out - she already has a date with a respiratory therapist to some Chinese restaurant when she gets out (not sure how that happened - I was at lunch). And a date to Joe's Crab Shack for crab legs with someone else. Child Life Specialists are coming tomorrow to start in on homework to get her caught up. Music therapist is coming tomorrow to play some songs for/with her. And they're working on getting her a stationary bike for exercise when she goes to the Heart Center after ICU - from what I hear, that could be anywhere from a few days to a week from now. She's had wonderful nurses and is finally getting to enjoy them now that she's awake and with it and not seeing things that aren't there anymore.

Well, say a small prayer for another good day tomorrow. We never know what we'll encounter around here!

Love to all, Angie

(P.S. Josie's participating in Jump-Rope-for-Heart at school in honor of Bailey. If anyone would like to contribute, you can send a check to Josie at our home address - which I won't publicize here - by next Monday.)


Blogger Bob Badger said...

Jean and I have benn praying for Baily all the way down in Mexico. God can hear us where ever we are. Keep up the good work Bailey.

8:23 PM  
Blogger Scott Needham said...


You're such an inspiration! Keep up the good work....I wish I could participate with your music therapy...that sounds like FUN! I'm thinking with just a little pleading you could get Aunt Vickie, Aunt Debbie, Aunt Cindy and your Mom to play THAT would be fun! I hope you sleep well tonight and know that I'll be saying a VERY LARGE prayer for you to have a good day tomorrow.

Love you all!

8:58 PM  
Blogger Annette said...

Yahoo! I am so happy! Bailey - you go girl!!!!

Annette :)

9:15 PM  
Blogger Mary Ann Lucas said...

OH my goodness you've got Tally doing the "Happy Dance". The thing is, she looks much cuter doing it than me! Jokes for the day:

What bone will a dog never eat? A Trombone.
What would you get if you crossed a hunting dog and a telephone? A golden receiver
When does a man act like a dog? When he's a boxer
How does a dog turn off the VCR? He presses the paws button.

I know......really bad, huh? sorry, couldn't help myself.

I don't know if you know who Mattie Stepanek is, but I loved that child and have all of his books. He always found hope in the most desperate situations. I found a poem he wrote in July 1998 that made me think of you when I read it tonight:

Songs of the Wind

Listen to the wind.
If you listen carefully,
You will hear soft notes.
Listen with your mind and
Heart-you will hear a song.
A soft, relaxing song that
Reminds you of peace,
Harmony, and love.
If you hear this song,
Always remember it.
For if you do,
You can teach it
To other people,
And they, too, will forever
Remember their Heartsongs.

I hope you sleep well tonight and have an even better day tomorrow. You and your Mom are my heros.

love-Mary Ann

9:31 PM  
Blogger Aunt Robin said...

Hi Bailey. Glad to hear things are going better (but, I knew they would). I mean, we're talking about Erin Bailey Hunsberger here. Bailey, Angie, Tom, Scott & Nancy I hope you all have a good night. Love, Robin

Bailey, it's Erica...our school has already collected $200 on the first day of Caring & Sharing for Riley so by the end of this week, we should have a lot more! Love Erica.

11:11 PM  
Blogger Annette said...

Good morning Bailey! I hope you had a restful evening. I'm so happy you're doing well and able to get up for a short while. I'm sure today will bring another wonderful new event for you! Keep up the good work - you're great!!!!!!


7:09 AM  
Blogger Diane Roe said...

Angie and Bailey: That is so great that you are doing well. It's also really great that Josie is helping, by doing Jump Rope for Heart. I sent her a note today.

We still pray for both of you and we miss Angie here at work. Keep getting better and come home soon.

8:18 AM  
Blogger Aunt Cindy said...

Woo hoo! And above all - Praise God! Oh, I am supposed to relay a message to you, Bailey, from a friend of ours. We had praise team practice last night and everyone was asking about you. As I was giving the latest update, I mentioned that you had even been drinking some Root Beer. Our friend, Lester, was excited at that because he drinks Mug Root Beer like it is going out of style. He said he now considers you his "Root Beer Buddy!"
Suppose I should get some work done....but I would sure rather come see you! We'll be there again some time soon. Have a great day! Love you!

8:49 AM  
Blogger Aunt Cindy said...

WAIT A MINUTE!!!! I said from the beginning I have dibs on the Joe's Crab Shack crab legs.... that better be ME you're talking about!! Things are great!! You guys are doing beautifully - I am coming this afternoon with some presents. Love you and miss you and I have the picture Tyler took of Bailey, Cortney, Angie, and me on my desktop background, so think of you thousands of times every day.
Love you so much

9:09 AM  
Blogger Aunt Debi said...

Well,Well, Well, making dates already, I don't think your Dad is going to like that. I am so glad that everyday is a better day, I keep thinking about you and praying for you. I think they should let you wear your hottie pink converse shoes to keep you smiling. I will wear mine this weekend and we can be twins when I see you. We love you so much see you on Saturday.

12:52 PM  

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