August 8: Day +37

First off, it's GREAT to have the family back together.

Bella has been really rallying over the past 24 hours! She is ALL DONE with this ICU business. Today, we took her off her vecuronium, which is the paralytic medicine, and placed her on a non-narcotic sedative called precedex, which will keep her sedated while not sedating her breathing capacity. This way, as she comes off the paralytic, her lungs will start working again on their own so we can ween her off her ventilator!

Speaking of which, tomorrow is a BIG DAY for Daylon! They are taking out his breathing tube in the morning!!! YAY, DAYLON! Good job, big guy! Please say a prayer that the O.R. team does a GREAT job, and that his airway holds it own after they SAFELY remove that tube. Again, we ask that ALL YOUR PRAYERS GO TO DAYLON TONIGHT... tomorrow is going to be a very risky procedure, and we nothing less than the hand of God holding that tube as it is pulled out of his airway. Thank you!

Wait, save a couple of prayers for Baby Elle as well. She is the newest Junctional Herlitz EB baby to arrive for the study. We had the good fortune of meeting Elle's wonderful parents tonight upon returning to RMH, and we had a good, long, heart to heart about what this process has been like. They are scheduled to have Elle's Hickman placed tomorrow, but Elle is having a tough time right now. Please send Elle healing strength, and send her parents comfort and support as they wrestle with staring at this journey Bella and Daylon have been on and consider jumping in themselves.

Okay, back to Bella. We spent most of the day just adjusting meds to dial in the right amount of precedex to keep Bella from wiggling too much. A little movement is okay, but too much movement and her breathing tube could hurt her. Respiratory Therapy has found blood in her airway since surgery yesterday, which means her tube cut her throat just from bouncing around on the ride down to surgery and back. I wish we could somehow spray a baby friendly WD-40 on her tube, and let it just run down the outside of the tube, you know, like chloraseptic or something!?

Bella's new lines are working FAMOUSLY, and her blood pressure is recovering. Her heart rate is coming down as they get the dosage right on the precedex. Precedex tends to lower heart rate, which in her case right now is a good thing since it's been in the 170's/180's.

So, over all, things are getting better for Bella! If she would just pee.... c'mon PEE! Why ya gotta be so shy? :-P

Numbers under the hood are all normal, and frankly, not necessary to report anymore! That's pretty cool, right? Thanks for the continued prayers, and let's have a great week, shall we?

Fabulous socks of the day...