Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Wednesday, April 21, 2004

Cycle 4, Day +13: Free Again...

Steven's fever turned out to be caused by an E. coli infection in one of the lumens in his line. The line that protrudes from Steven's chest is shaped like a "Y", the infection was in one of the branches of the line.

Because the infection was in the line, antibiotics were started, alternating the lumens, so that both sides of his line would receive antibiotics.

From Sunday forward, Steven has had no fever. Blood samples from his line were cultured again on Monday, this time all cultures were negative.

The doctors wanted to keep him until Wednesday, I reminded them of how they let him out on a Tuesday last time he had fever and how he did fine.

Because of the nature of his infection this time, he needs to receive IV antibiotics in his line for a full 14 days, and no way we can think of staying in the hospital for another week and a half.

So, they released him yesterday (Tuesday) with IV antibiotics, which I administer to him at home. The antibiotics are only stable for 24 hours at a time, so a home infusion company delivers them to me every day, one day's worth at a time.

He takes three doses a day, each dose takes a half hour to infuse, and I hook them up every eight hours.

By way of trying to convince us to stay in the hospital, one of the doctors told me, "You'll never be able to get more than 7 1/2 hours of sleep at a time if you try to do this at home". I told him that it was obvious that he had never spent a night in a hospital room, with the IV pole beeping every few hours, nurses coming in and out and banging the door into the couch I'm sleeping on each time, Steven whimpering as he's dragged out of bed to pee at 5:30 am.

Steven's ANC was 400 yesterday when we were released, so he was still neutropenic, but today he was at 2000, the threshold to stop his daily infusions of GCSF. If Steven is over 2000 again tomorrow, then no more GCSF.

So, we're back at Target House. The second boy of our little group of four boys with the same sort of brain tumor, Jake, went home yesterday to Kansas City, after stopping to say goodbye to Steven.

Just Steven and Dylan left. Steven's counts are coming up. The end is in sight.

- Kathleen

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