It’s been a frustrating day. As much as I love Children’s Hospital, and I do love them, they are a case study in dysfunctional operations. If not for the unbelievable talent of the doctors and nurses, I’d consider moving Jordan’s case somewhere else. But the doctors and nurses are fantastic and I can’t imagine trusting her care to anyone else.

I took the day off to be with Jordan, but the hospital implemented a new policy that only one parent can be with the patient at any given time in the radiology unit. So, Jordan is resting in recovery and I’m stuck in the lobby. It would have been nice to know about the rule change (especially since the hospital calls the day before to go through the procedure), but as I said, operational excellence is not CHLA’s strong suit.

It’s a long day and we’re all a bit edgy. We won’t know how the scan went until later this afternoon. Jordan has a list of requests for her team. She wants permission to pierce her ears and she wants them to stop giving intravenous chemotherapy. I suspect they’ll clear the former and deny the latter.