Monday, June 27, 2005

VAD Rate Coming Down

The girls left this morning so Josie could make it to cello camp. They called this afternoon to tell me all about their batting helmets for softball. As a reward for Marissa pushing through her fear of batting, Tom got their helmets painted. Marissa described hers as, "It's got my name on it and it has one color and another color and another color and another color and another color." I think that means it has her name written in rainbow colors. She loves it! And Josie described hers as her name with flames coming out of it. This might be the beginnings of a Harley girl! Haha! They were both so proud. Marissa is begging me to come to her game this week because she really, really wants me to see her bat and they have very few games left. I'm working on making that happen.

Dr. T came in and brought Bailey's VAD rate down from 90 beats per minute to 80 beats per minute. He said tomorrow he's going to bring it down another 10. They're obviously still looking at the possibility of weening her off of the VAD. We'll see!

The front desk called up to Bailey's room this afternoon and said they had a package for her. It turned out to be two autographed pictures of David Wolf. Is that cool, or what?! (He's an astronaut from Indianapolis. You can read about his incredible career at One is a picture of him out in space. It's really neat. And, then, she received an autographed picture of the U.S. Gymnastics Team and one of their warm-up suits. Isn't that neat?! If we're out of here by then, she also gets tickets to the U.S. Nationals at Conseco in August. (Thank you Cara!) Unfortunately, she was sleeping when that arrived (she's getting IVIG and the pretreatment of benadryl must have knocked her out again) but she woke up just long enough to look at the picture and the warm-up suit and fell back to sleep. (Yeah, I know. She'll wake up and be up until 4 a.m. again.) She probably won't even remember seeing it, so I'll get the fun of showing it to her twice for the first time. She's hoping to get back into gymnastics at some point. She enjoyed it and was really good at it until she had to quit a year ago in April because of her irregular heartbeat.

No lightning bugs tonight. We could have dragged her I.V. pole outside but they have to take her vitals often with the IVIG, so we didn't attempt it.

Have you heard about those shark attacks on the Florida panhandle today and a few days ago? That's right where Josie was a few weeks ago. That's pretty scary! If any of you are going down there anytime in the future, just be careful. That's awful.

Fourth of July is coming up soon. I have to go scope out the parking garage for an outlet. I hear that the patients who are able to get there watch the downtown fireworks from the top floor of the parking garages. We'll either have to find an outlet or a really, really long extension cord! We can't miss fireworks!

Have a wonderful night, everybody. Catch you tomorrow!



Anonymous Great Aunt Robin said...

Hi guys - That is so cool about the pictures Bailey got. She is getting quite a collection. Crummy way to go about it though! Brittany has a teammate who made it to the Visa's (nationals) at Conseco. That would be great if you get to go Bailey.
Speaking of sharks...I about died when I heard about that. How awful.
Love you bunches -

10:10 PM  
Blogger Annette said...

Bailey will soon be able to open up a mini-museum - with all of her memorabilia!

Last night I was watching part of a documentary on TV about a teenage boy who was diagnosed with some sort of leukemia. They followed him and his family through his journey of getting a bone-marrow transplant. Fortunately, it had a happy ending - one of his sister's matched and donated her marrow. He went back to school and then tested negative for any signs of the disease.

I was thinking of Bailey and the documentary team. I thought that one day Bailey will be home with her new heart, and we'll all get to see the documentary about her and her journey! Then I got to thinking of what an amazingly awesome mama you are Angie - I know you get caught up in the day-to-day busyness of life in the hospital - but you truly are an amazing person!

Have a great day and stay cool!!!!

Annette :)

5:34 AM  
Blogger Martha said...

I saw that same documentary! I couldn't agree more with Annette!! Amen to that!!

7:37 AM  
Anonymous Kara said...

Hey Angie and Bailey! Angie it was nice seeing you in person last night! I am sorry that Katie was so high maintenance and scared, which did not allow me to focus on you and Bailey and your needs!
You two are an amazing pair and I can not wait to see Bailey in all her gymnastics glory when she is feeling better!
Please let us know what else we can do for you! You are in our thoughts and prayers!

Kara, Jami, & Kaitlin

8:03 AM  
Anonymous Anonymous said...

Hey Girls!!

So glad to hear that David Wolf's NASA stuff arrived. I hope you enjoy the astronaut things. I figured that that was one connection that we had that not many other people had.

Prayers and good thoughts are on their way from Virginia every day. Take care and God Bless!

Jane & Bob Hostetler

1:23 PM  

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