Oct 3 update

Things didn't progress quite as smoothly as we anticipated today. They were able to remove about 160 ml during dialysis and they also gave her a diuretic to try to get her to urinate more fluid. The diuretic didn't do much good at all. And the 160 was good, but not quite the dent we were hoping for compared with the 2,000 ml's she has on. Her lungs sounded much better with the amount of fluid they were able to take off on dialysis, but they were still quite "wet" and "crackly." You could feel the crackles just by placing your hands on her chest. Because of this, they decided not to remove the breathing tube. They didn't think she'd be able to sustain breathing on her own with her lugs still so wet. Tomorrow they plan to do dialysis again first thing in the morning and hopefully remove up to 200 ml of fluid. Definitely making baby steps in the right direction.

Her blood pressure is still lower than they would like; so she is getting "epi" (kind of like an adrenaline boost) to keep it up. They tried to 'wean' her off the epi about 4:00 this afternoon and cut her dose in half, but her blood pressure started dropping too low and they had to go back up to the full dose. It's because of her low blood pressures that we're not able to remove much fluid on dialysis. It will definitely take a few days to get her back to her normal weight.

She also has had a fever for the past 24 hours and they figured that it was from the trauma from the surgery. However, if it was from trauma, it should only last about 24 hours post-surgery. So when it spiked to 38.8 C tonight, they took blood and urine cultures to see if she may have gotten an infection from everything that has been going on. It will take about 24 hours before we'll know if she does have an infection; however, she is on an antibiotic now to cover whatever it may be.

In spite of this all, everyone who comes in to see her or who works with her in any way says she looks remarkably well and is tolerating everything very well. She's a fighter. She wants to be awake from the anesthesia. When the anesthesia medicine starts to wear down, she wakes up very quickly and fights to stay awake. Because she has the breathing tube in, you can't hear her voice or hear her cry. But you can 'see' it. She opens her eyes, stretches her arms and legs, arches her back, and tries to stay awake. But they don't want her awake with the tube still in, so they quickly put her back to sleep with more medicine. It will be good to hear her voice again and "see" her sweet spirit again tomorrow.

Benson came to visit tonight. We tried to prepare him for how Claire would look, but his first comment was, "I didn't think that was Claire." After just staring at her for a while and simply saying "uh hu" as we talked about the tubes, monitors, tape, lights, etc, he finally said "I just want to sit down here and stay by her for a little bit." We let him stay and he then got a little more comfortable and started asking his own questions. "Why is there tape on her face, what's that tube in her mouth for, why is she asleep, why doesn't she have her pants and shirt on," were some of his 4-year old questions. At the end he said good bye and told Claire that he loved her and missed her. He asked to give her a kiss, but because of a little stuffy nose he has, we told him it would be best not to touch her so we didn't get her sick. On the way to the car he again told me that he missed her and hoped she got all better soon so she could play with him. He is SUCH a sweet, amazing big brother. He REALLY does love that girl, just as much as the rest of us.

Hoping for a quiet night, a few more zzzzzzzzzzzzzz's and a day full of GOOD events tomorrow.