This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Wednesday, October 14, 2009

Balancing Act

I have to have complete faith in the doctors and nurses at St. Joseph's Hospital and Medical Center 7th Floor Pediatric CardioThoracic Intensive Care Unit (PCTICU) in Phoenix, Arizona. ....blind faith.

Scarlett's blood pressure goes down?... they increase her intravenous fluid. The fluids build up, she gets puffy, and not she's peeing as much as she should?... so they start her on a diuretic (drug to make her go pee). They want to keep her drowsy?... they increase her sedative. They want her to gradually wake up?.... they decrease her sedative. She's struggilng to breathe on her own?.... they turn up the ventilator.   She seems to be doing great on breathing?..... they turn down the ventilator.  Her body temp is getting a little on the low side?.... They put a blankie on her. Body temp starts to creep up?... take the blanket off. She's waking up, freaking out, her numbers are all outta wack?.... They increase sedative, increase oxygen, and gently calm her down. It's all a balancing act, which they perform extremely well.

Whenever she wakes up, her numbers drop, her blood pressure goes way up. Mommy can't calm her down, because mommy's voice turns Scarlett into the Incredible Hulk.. and she wants to tear off her restraints, pull out her tubes and jump in mommy's arms.

We'll see how today goes. I hope they're able to get the breathing tube out today and turn off the ventilator (CPAP). I will keep posting throughout the day.

1 comment:

  1. I know how you feel so well. The balancing act continues even when they get the tube out. I feel like it will probably continue their whole lives. Just wait until they take off the Hope took her neck IV line out almost immediately. I'm glad I wasn't there for that little temper tantrum.

    You all remain in my prayers.