Well, we have made it through the critical 48 hour period! Late last night they turned off the medication that was keeping Presley's body in a paralyzed state. We stared and stared at her, talked to her, and sang to her. She began to open her eyes, wiggle her feet, and lift her arms. After describing our little firecracker to our nurse, he thought it would be best to put arm bands on her to prevent her from attempting to pull out any of the tubes. This turned out to be a good decision, because within a few minutes our little fighter was doing just that! In classic Presley form, she got excited very quickly and started trying to sit up, raise her arms, and kick her legs. She even performed her signature move with an arm thrust and bent knee full extension kick out! It was amazing and also heart wrenching at the same time. We could tell she wanted to talk and get up out of that bed. She, of course, doesn't like all of the hook ups, but her body still has a long way to go in the recovery process. They drugged her up to keep her calm and settled down for the night.
Her fever is down, praise God! Her heart rhythm is stable, and her fluid output is good. Her blood pressure is jumping around a bit, so they need to keep her on pretty heavy doses of medication to keep it under control. This is still quite common considering the huge surgery our little one endured. She is starting to take more and more breaths on her own, so they are able to decrease the ventilator a bit. Today will be another relatively quiet day probably with moments of her trying to move but keeping her in a very sedated state. It's still a wait and see how she does kind of thing, and everyone is saying to just let her "drive the bus" and dictate her rate of progress. We have assured them that she will be more than happy to take on that role! We have been given glimpses of our feisty little girl, and they are moments to celebrate!
Yesterday we also found out through an abdominal ultrasound that another word was added to Presley's diagnosis: "heterotaxy". This basically means that things aren't exactly where they are supposed to be. We knew that this was true of her heart, but it also turns out that a few of her vital organs are in the wrong place. The doctors have reassured us that it really doesn't change anything, but it's just something to be aware of. So, overall our girl is even more unique than we thought!
When she seems ready, hopefully in the next couple of days, she will be extubated (a fancy word for removing the breathing tube). That will be the next big milestone in her recovery! At that point she should be able to be more awake and more comfortable. One step at a time! Prayerfully, our little ballerina will be ready very soon to make her wish come true and take her ballet class! We can't wait to see you dance, spin, twirl, and leap, sweet girl!
"Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:6
