Saturday, November 17, 2007

Continued Prayers

Bailey's blood pressure has been all over the place (from the low 50's to the 130's) in the last 24 hours. This morning she hit the low BP and we had doctors and nurse practitioners in here watching. Dr. T came in early this afternoon and put her on nitric. He's having a hard time understanding why yesterday morning her CVP was 10 and in about an hour's time it jumped to the 20's. His explanation is that either this is just post-pump recovery and the nitric will help settle her BP and CVP, or the anesthesia has worn off revealing where her heart really is. He said he would give her a few days on the nitric in the hopes that things will level out and her numbers will look better. One day at a time. Only God knows, and only in God's time.

She didn't sleep at all last night. And I feel completely guilty about that because I had the best sleep I've had in several days. It's a good thing Stacia (our wonderful night nurse) was here to take good care of her and keep her company. This morning she was given adavan so she could get some sleep, but Dr. T thinks that might have contributed to her low BP. So no more sleep medicine until they can figure out what the next few days are going to bring.

It's really hard to keep my eyes off the red and the turquoise numbers on the monitor. On the plus side, her heart rate has been steady at 85. I haven't heard any PVC's, and she typically had several in a minute. And she has been eating solid food today and hasn't been nauseous at all. She weighed in 4 pounds heavier this morning, but Dr. T says as long as she has elevated CVP the fluid will likely return. As I sit here, the monitor just alarmed with a low BP (low 60's). I just wish that all it took was for me to "will" the numbers to where they wanted them to be. Since that's not going to work, I just need to turn my chair around and stare at the wall instead of the monitor. I can't really watch TV because the sound only comes out of the handset attached to Bailey's bed. I could turn it up loud enough to hear it, but that would be blasting Bailey, so I watch TV with no sound. Actually, it's pretty entertaining - especially the Food Channel. Rachel Ray, being the most animated of the personalities, makes me laugh. I have no idea what she's saying and cannot even identify some of the ingredients she uses, but her facial expressions are something else.

Tom and the girls came to visit tonight, and Rissy has lost her first front tooth! And the other one is loose too and hanging crooked. She said the tooth fairy came, but she and daddy had to search for it because her pillow slid off and ended up under her bed. I'm so grateful for and proud of Tom that he can keep our household running and take such good care of Josie and Riss. It's a lot less worry for me to know that the other half of my family is safe and sound. He's taking Josie shopping for black pants and black shoes that she needs for a choir concert coming up pretty soon. He was asking what size she wore, and I said, "Josie can tell you that. Just be sure to go to the Juniors section." He seemed a little out of his element, but I'm sure he'll do fine. Josie had a volleyball game today. She said they lost, but it was a lot closer than the last time they played the red team.

Well, I'll get back to my reading. We'll see what tomorrow brings us.



Anonymous Aunt Robin said...

I'll say some prayers that those numbers get to where they are suppose to be and stay there!! Oh I wish I could have a camera to photograph Tom and Josie on their shopping trip. Tom shopping in the Jr dept now that has to be a hoot. Bless his heart he is a wonderful guy and a terrific father (and a pretty good nephew too!! ha) Give Bailey a kiss from her Aunt Robin and tell her how much I love her.
Talk to you soon -

9:24 PM  
Anonymous Anonymous said...

So sorry to hear that things are kind of crazy with all the numbers right now. Hopefully everything is just taking awhile getting adjusted after the surgery. I hope you both can sleep well tonight. Glad Riss finally lost that tooth!! Lots of prayers and love your way!!

The "Other" Aunt Robin, Uncle Jim, Erica, Emily and Lyndie

9:39 PM  
Anonymous Anonymous said...

Hi Ang....well, my goodness it's a roller coaster you are on. There are prayers all over the place being said for Miss Bailey. Please know that you are in my thoughts every moment each day and I hope the you are remaining positive and strong. Please don't hesitate to get my cell phone number from Vickie or Debbie and I'll be there in a flash! We will will those numbers steady together with all of the wonderful people on here! I love you...

Mary Ann

10:13 PM  
Anonymous Anonymous said...

Bailey and Angie,
I came into night hoping you would have improved enough to back in the Heart Center. However hearing the difficulties you are having, best where you are for right now. I have been keeping tabs all week on you all, and my prayers and thoughts are with you !!!!!! Hope everything gets better, so you can come back HOME(Heart Center). Hope to see you soon, Angie try to get some rest, I know it's hard, but she really needs you, and you don't want to get sick.


10:26 PM  
Anonymous Anonymous said...


If you need to get away for a few minutes and talk to someone, please feel free to come up and see me.My door is always open !!!!!
And have have good ears too!!!!


10:32 PM  
Anonymous Anonymous said...

Bailey and Angie
Sitting in Telemetry tonight, I was thinking of when and how I would donate to the Riley Foundation this year. So I thought tonight would be a great night to give, IN YOUR HONOR BAILEY!!!!!! You have inspired me to be a more giving and loving individual. It's amazing the effect you have had on me since I first met you when you came to the Heart Center before your surgery for the Berlin Heart.
So this year was for you Bailey, always know, I care about you and your family. If there is anything I can do to help, please let me know.


2:25 AM  
Anonymous Anonymous said...

Angie & Bailey-

In God's Time! Angie- Prayers are
continuing as we type. I know both
of you have touched many lives and
we are forever changed. Just know
we are with all of you in prayer
and our every thought. God Bless you and we will see you soon.

Peace & Blessings-
Mark, Dee, MaKayla, Matthew & Michael

9:06 AM  
Anonymous Anonymous said...

Angie and Bailey -

Well, I pray today brings more stable numbers for you, and that Bailey gets some much needed sleep. Praying for you guys.

Kim C.

9:59 AM  
Anonymous Nancy Hobbs said...

I just know today will be better. You guys are constantly on my mind and in my continual prayers. Jesus is still working! "Be strong and of a good courage, fear not, nor be afraid: for the Lord thy God, he it is that doth go with thee; He will not fail thee, nor forsake thee."

10:32 AM  
Anonymous Anonymous said...

Thinking about and praying for you guys. It's hard to be so far away. I know the numbers will get better. I can just feel it!! I think it's wonderful that Tom is taking Josie shopping. Miss you guys more than you know. Love, Debbie R.

5:36 PM  
Anonymous Anonymous said...


I'm here with my positive thoughts and prayers. I wish I could do more. I would come and sit with Bailey at night to let you sleep if Bailey would agree with it. I know there's no one like her Mother. I'm looking forward to her being transferred back to the Heart Center. You can call me at any hour of the day or night - I'll gladly answer the phone. 356-4910.

Love and prayers, CAROL

Hugs and kisses to those at home !!

6:19 PM  
Anonymous Jennifer Deiter said...

Bailey's courage and strength are a true inspiration to our family. As the mother of a "heart baby", I admire your strength. It's so very difficult to not be able to "fix" the situation. The monitors are so addictive and I think it's sometimes hard for others to appreciate situations like this.
My son, Michael, was just a few rooms down from Baily in ICU until today when he was moved upstairs. He has a long way to go though; he was also on the Nitric and is Dr. T's patient.
Please tell Bailey she is in our thoughts & prayers and thank her for being such an inspiration. Thanks also to you, Angie, for being such an inspiration for me as a mother!

7:25 PM  
Anonymous Anonymous said...

Angie - Bailey: I sure hope today was a better day. I was going to come see you today, however; I have this nasty cold, sinus infection or whatever it is and sure do not want to pass it on. I will be up this week one night though or, who knows even maybe during the day? I love you both much. There is a huge network not only on here, that is praying constantly! Miss you ! Lori

7:27 PM  
Anonymous Jennifer riley said...

I'm glad you got some sleep, Angie. I'm sure you need it. We're praying that those numbers will stabilize and Bailey's health will continue to improve.


8:49 PM  
Anonymous Anonymous said...

Angie, About the TV without sound. Try using the close caption.. you can have the words on the screen.
Bless you.

9:15 PM  

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