Saturday, June 25, 2011

I'm burning up in here!

Today has been a relatively quiet day. Aurelia went through the night with only a few hiccups, trying to turn over a few times, needing a pain management rescue now and then, and otherwise attempting to wiggle free of her intubation. Truly, though, she's doing relatively well. She's a wonderful fighter determined to beat all that comes her way. She inspires Jillian and me to keep faith and strong together.

Plastics came by this morning and moved her jaw two millimeters. Aurelia took it on the chin like a champ (da da dun, ching!) even after only 30 minutes lead in time with a pain med treatment. She did so well the plastics folks are intending to come back tonight for another 2 millimeter extension.

The day itself has been rather uneventful which oddly keeps me on edge more than a crisis would. Aurelia had some mild alterations in her pain medications to keep her sedated and from turning over (which she successfully completed early this a.m.) and subsequently aggravating her jaw. The IV she lost yesterday in her foot has yet to be replaced because they taped down and isolated the remaining IV in her left arm with a brace. We hope her veins are repairing themselves in case we need to drop a second line in for medicine administration should this last IV infiltrate.

Aside from that small adjustment to her pain medication, our daughter continues to gain strength. Her oxygen saturation levels are good, no longer suffering from momentary desaturation and she appears to be bouncing back well. We have a few concerns, such as a stubbornly resistant slight temperature, a fairly good amount of phlegm coming up from her lungs via suction, and a resulting junky sound over the stethoscope. The attending isn't terribly concerned; fevers are common after surgery and broken bones, and Aurelia's labs yesterday came back great. Similarly, if there is an infection there have been no substantial changes to Aurelia's vitals, meaning she is resisting the bacteria/virus well on her own. If there is a change in any vitals then we'll culture some of the phlegm from her lungs and draw more labs.

We are hoping for some more good news soon, however, particularly regarding her tracheomalacia. ENT did not mark malacia as present during the scope, so we don't know for sure, but we can hope that our little warrior has outgrown this airway debilitating problem. On a scale of 1 - 4, with 4 being, "HOLY CRAP, CALL IN THE REINFORCEMENTS," Aurelia's throat is listed as a 1, or a non-critical airway. That thrills us, since six months ago she'd have airway collapses from getting too worked up! We look forward to final confirmation from ENT, but we think the news will be good. We hope, anyway.

So that's all we have for now from CHOP. Maybe more later, if not, definitely more tomorrow.
Here's our girl this morning, resting after having her jaw advanced. Please no comments about her thighs. She's very sensitive about them. ;)

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