Monday, April 03, 2006

Baby Thomas - Part 3

Last week I introduced Baby Thomas and his truly brave and frank mother, Sara Bickle. Sarah shared some more comments with me about Thomas's care. Their experience continues to reinforce how important it is for hospitals to attend to the total expereince of care.

Here are Sara's comments:

I mentioned before that the Children's nurses and doctors had been so motivated about pain and so proactive about preparing me to be the "care manager" for little Thomas. When we moved to the oncology floor Monday, I was disappointed by a difference in the way we were treated there, and this change brought to my attention the practices that had made my stay so positive on other floors.

The first change I noticed was that, out of about 14 people who came into our room in two days, just three of them introduced themselves and told us what they were doing (one was a housekeeper - I must say, Children's housekeepers rock). I never realized what a gift this had been until I didn't have it. Knowing someone's name, department, and what they're doing to your kid is particularly important in a teaching hospital like Children's, where about 20% of the doctors and nurses you see aren't allowed to do much for your baby without calling someone else in. Talking to the wrong person while your trached baby is wretching and writhing feels a lot like being put on hold when you've called 911.

The other big change I noticed was that people assumed I knew a lot of things that I didn't know. Nurses would ask me if my son was on such-and-such a medication and a doctor looked miffed when I couldn't tell her precisely what kind of medicine I was asking for on Thomas's first night of chemo. I got pretty frustrated, but later I realized that on the oncology floor, all the families and patients really are professional patients. Thomas was the newest and youngest patient on the floor and we just didn't have the comfort level and information that everyone else apparently had.

Those are really some of the only negative experiences we had with Children's, and it didn't seem like that big of a deal once I said to myself, "It's just a different culture." But I wonder how I would feel about it all if this wasthe beginning of our hospital expereince, and not the end. The good news is, at Children's, I could probably talk to a floor manager and get a sign on our door telling staff to introduce themselves, and Lord knows, I am way more informed about meds today than I was three days ago.

You can read more about Baby Thomas at The Official Thomas Bickle Blog.


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