Tuesday, March 6, 2012

Fontan 3

The surgery is the scary part, the post op is the hard part. What a night! The surgeon told us two things are different this time around that make it much harder... 1. she's older so she'll have to wake up sooner and will feel it more and can also tell us how she's feeling. And 2. that she could be here awhile draining fluid. We are seeing the first.. She whimpers with every breathe. Every hour or so she wakes up in intense pain and has to be given more morphine. She's got a high tolerance to pain meds. She's so uncomfortable and it is literally heart breaking. When she opens her eyes they are so pained and scared. One of us is always right there for when she wakes up a little. All I feel like I can do for her is hold her hand.

Hopefully today we are going to come down on all her meds (she is still getting 6 different ones) and then we should be able to get some of her lines out and by the end of the day the goal is to have her sitting up and drinking. It'll be a big day for her.

The good news is she has pink toes for the first time in her life! look at that toe!


Lila said...

Pink toes are the best. They really, really are. We continue to pray for her, and both of you.

Angie Milne said...

I know how much that little pink toe means to you!!! and what it means for Bela! The other pictures kill me though. So heartbreaking to see her like that again... She is a miracle girl, such an inspiration. As are you and Tan... Love you so much.

S and K said...

That is a GREAT pink toe!!!!!! :) it's the little things! Hope the day goes as planned & she can handle it. We're always praying for her! Here to help if you need anything!

cici said...

Hoping and Praying for a peaceful day for all of you.
Just your voice and feeling you next to her will help ease the pain.
She's such a sweetheart.

Anonymous said...

you have an amazing family, and an amazing girl there! I've cried through reading your story- it kept me up last night, after i saw the picture of her post extubation- we have a common friend on fb, which is how i came across her picture.... you, your family and Bela are in my prayers- and so very in my heart. My heart is filled with love and amazement at the things our Heavenly Father allows us to experience here- to help us learn, grow, love, live, and be drawn closer to Him you are an inspiring mother- thank you!

Jenna{Mommy in Manhattan} said...

You guys are amazing parents. Dennis and I caught up on Bela's story last night. I have to say, she is one amazing little girl. Our prayers are with you guys always!

Debbie Wallace said...

Dear Avery and family,
You are all in our prayers. Please know that we are here to be helpful if you need us. We certainly love your little family.
Debbie, Chris, Hannah, Addie and Aimee

Rachel sends all her love!

The Smith's said...

Praying for Bela!