I Can See Her Lips

September 19, 2008

Well, I wasn't wrong about yesterday turning in to a lonnnng day. We made it back from Houston at 1:23 this morning, fourteen and a half hours after starting out (FYI, Erin's transfusion orders said to run the unit and a half of red blood cells over four hours. I don't know if they also ordered six and a half hours of sitting around time or if that was a bonus for our good behavior). Two important outcomes: 1. we made it through the transfusion without running a fever despite Erin having an ANC of 56 (no, I haven't left off any zeroes. . .we need that number to rise above 500 for Erin to make it back to school on Monday). A fever would have landed us in-patient for three days; and 2. I can now see Erin's lips as a distinct facial feature and not just more pale white skin attached to the pale white skin covering the rest of her face (before last night the only way I could distinguish her lip was that they had no freckles).

Our day felt much shorter than it was because Elaine and Nico helped us bear the weight of the day. I can't believe we have the blessing of friends who would volunteer to drive two plus hours into a hurricane-damaged city, sit for hours on end in uncomfortable chairs, waiting and waiting, then turn back around to make the drive home. Because they came with us, Erin and I not only survived the day but thrived. I had warned Nico before he loaded in the car that Erin felt pretty miserable and with a hemoglobin of 6.2 (below 8 triggers a transfusion, and 11.5 is the low end cut off for normal. . .where most of us would feel a bit limp), he might want to pack his I-pod or a handheld game, since she may not have much play in her. Yet, companions seemed exactly what Erin needed. She and Nico laughed their way their several more episodes of Hogan's Heroes. We played Crazy Eights, Casino, Upwords, Kadoodle, and count dominoes. We made the hours pass. At the end of the evening, at 11:05, the nurse unhooked Erin from the pole, and said, "Some parents like to stick around for a while if their children registered temperatures between 99.5 and 100.0, like Erin did, just to see if they have a fever coming on." We politely said, "No thanks," and headed towards the door. I fetched the van, we loaded, and drove away by 11:23, thirty-seven minutes before the City of Houston curfew kicked in, and driving on the streets of Houston would have become slightly illegal. I think we passed over the city limits at 11:55. A fever never materialized.

Dr. Heidi Russell didn't have too much to say about Erin. She is concerned that the mucositis and sores (that possibly extend from top to bottom along the route that food usually travels) could provide an easy target for bacterial infection. She pre-empted my inevitable plea for leniency and a Bryan hospital venue in case of a fever and hospitalization, by telling me to get back to Texas Children's without dawdling if Erin meets any of the admission requirements. This puts the burden on all of you to re-double your efforts and petitions to higher authority to keep Erin fever free until her ANC recovers. We hope that it roars back over the weekend, clearing the deck for a start to a normal week on Monday.