wax and wane

Every hour brings something new. Wax and wane. Net: 0

They FINALLY got a stool sample from Aaron but they worked all night and into the morning and they basically irrigated his colon to get it (and people pay money for that?). More blood draws to get to the lab. Despite this, Aaron looked pretty good this morning (it's all relative) compared to yesterday and I thought for sure he was on the upswing. He looked so good that Dr Bergman took him off the IV fluids - wax. The physical therapist came in shortly afterwards and agreed with the neurologist's assessment that it was mild - wax. The speech therapist came by at 10:30 and observed a feeding to check his swallowing and airways in order to evaluate the need for a tube - wax. As the afternoon progressed, however, he looked more listless and droopy. He didn't nurse well or take a bottle well - wane. The neurologist came in and did an evaluation. The first question she asked me was whether there was any construction in my neighborhood...

well, yes, actually there is. Now Aaron is still only breastfed and not eating solids yet so we know he didn't get it from food so the only other reasonable explanation is outside. So the construction question made sense. We are getting a new storm water retention pond in the neighborhood and they've been digging for a couple weeks. The neurologist said in that digging they stir up the dirt and the spores. The spores are then released in the air. Makes perfect sense...

Anyway, the neurologist continues and says that even if the test comes back positive for botulism they probably won't give the anti-toxin since it's been over a week now (besides the fact that they have to ship it from CA and it costs $45,000). She says she'll be back tomorrow.

Lunchtime rolls around and Aaron is napping. I head out to get lunch and aspirin. I have a migraine that won't quit. I go to the cafeteria without really wanting to eat anything. Pizza? not again. Burger? ugh. Salad? maaaybe. I settle on chicken parm, broccoli, and a roll. I pay and decide to take the time to eat away from the room and call Tommy to check on Bill's status and confirm what my sister said over the phone about brain activity. He doesn't know much about the results and I call my mom. They finished the test and she hands the phone over to Jim Jackson. Bad news. No response. Wane.

I try feeding Aaron again and he's not interested - wane. Another doctor arrives to perform the nerve conduction test but he tells me that it's very uncomfortable and Aaron should be sedated. ummmm. He confers with the doctors. I call Steven and tell him what the doctor said and to try to get here quicker. The resident comes in after consulting with Dr Bergman and we all agree that it's not necessary to do the test right now and we'll wait until the lab tests come back. I try feeding Aaron a bottle this time - wane. I ask the Resident to restart Aaron's IV as a precaution. I don't want him backsliding. Steven arrives, yeah!, and we catch up. He feeds Aaron and this time Aaron takes the whole bottle - wax. I hit the road worried about rush hour traffic to get home and do dinner, bath, and bedtime with Zofia. Thank God for everyone who is helping us right now. Brigitte made us dinner and Mary Lane offered to hang out in the house until Steven gets home tonight.

I get a call from Tommy. The neurologist told my mom that they will perform another brain test tomorrow and if there is no response they will not do any further testing. He tells me that my mom has asked for his opinion on what she should do and, wisely, my brother reminds her of their living will. Wane.

I drive back to the hospital and Aaron is delighted at the new toys from home I brought - wax. He finally conks out and sleeps - wax.

and I am reminded of the wheel of life.