Friday afternoon update...

First...if my update wanders please forgive. I have been up for the last two days and I am coming off adrenaline surge from the days events.

She is currently in the ICU at Kaiser Walnut Creek. She is a very sick little girl, but they still haven't isolated exactly why. They know she is battling some infection, but have yet to isolate it. Because of her rapid decline over the past week, and her condition upon admit to the ER, they got aggressive and have thrown 5 different IV antibiotics at it. Kaiser is known for their judicious use of antibiotics and the benefits of that approach. It is also apparent that they will go above and beyond that approach when the patient warrants. Well, Sara warranted.

When we arrived at the ER she was weak, laboring to breath even with the ventilator doing the work for her, not coughing much and when she did coughed up bloody junk, she was sweating profusely, temp spiking 102+, heartrate was very high (140), was starting to rash, had dark orange urine, and could not control her eyes.

She relies on her eyes as her only form of communication - manual or electronic. Several times over the last two days she has either gotten too weak to try and blink and follow, or has had instances of uncontrolled blinking where she just keeps on going. I was able to figure this out after getting very frustrated that she wouldn't "shut up" the blinking and actually answer a question. She couldn't. And she couldn't use the letterboard. That was hard because suddenly our only means of communication was gone, and she needed to tell me where it hurt, what felt bad, how long, etc. She was scared, because that was not working for us, so i had to tell her that I didn't need her to tell us - we'd figure it out.

They assessed her and got the history of this illness from me. They were surprised at her condition rolling in and even more so when they started getting the rest of the picture. They started taking a flurry of labs and samples, started changing out dressings and looking at every opening on her. They took a chest x-ray and listened to her lungs at length. they were very interested at the condition of her traech when they noticed her bleeding from it when she coughed.

I met with the doctor and he told me of his first assessment. She has pneumonia of some sort, but not as major as she appears on the surface. His concern is that what he saw there wouldn't cause her to be as sick as she clearly was. So he was going to start treating the most likely culprits and load her up with fluid. He was surprised that they had not been running more into her before she had to come over (me, too. I requested they get an order for IV fluids on at least three occasions...) He assured me that they would find out what was making her so sick, and in the interim they would get her stable again. He told me that he was going to have the Hospitalist come see Sara as well.

The whole time she had 2-3 nurses and an RT orbiting around her, drawing labs, wiping sweat, clarifying history, giving her treatments, and reassuring her and I both that its ok.

Sara was so weak and exhausted that she drifted in and out of sleep. I am sure there were a few times it wasn't sleep at all. But she'd open her beautiful blue eyes just a peep to make sure I was there. I was...doing my navy pacing. My pacing is done as if I were marching...

After what felt like an eternity they finally had a bed available upstairs in the ICU. We moved up there and her nurse and RT started trading places at her bedside. And a whole other volley of lab tests had to be drawn and run. Meanwhile, they threw three other antibiotics up on the pole and ran them into her...along with a whole bunch of fluid.

By the time late afternoon rolled around, she would crack the occasional smile, was coughing more and we had been able to communicate clearly a few times. She had a great deal of pain in one of her legs, and they gave her vicodin for it, which looped her out a bit, too. She was still spiking temperatures and sweating profusely, but doing much better on the vent.

By the time Daniel arrived she mustered the biggest smile i've seen in days.