The author, age 7, spent two and a half months this spring and summer at Children's National Medical Center, fighting a rare and life-threatening autoimmune disease brought on by her juvenile rheumatoid arthritis. She came home in July, grateful to her many doctors and nurses but full of ideas about how hospitals could make stays more comfortable for children.
She didn't keep these ideas a secret while in the hospital. She shared them, sometimes in frustration, with her doctors and nurses. Many tried to accommodate her requests.
Here, in her own words, is the list of "commandments" she dictated to her mother, Washington Post columnist Michelle Singletary.
The doctors and nurses and many other people were really nice to me when I was ill, but I wanted to write these commandments so that people know how to treat kids when they are in the hospital.
1. Don't surprise me. Tell me what you are going to do before you do it. I got very upset when doctors just came in, woke me up and started doing things to me. I hated that. Please let me know what you are doing way before you touch me. If I have to get a shot, don't wait to the last minute to tell me.
2. Always think of a less painful way of doing things. I had to get a needle every day. First it was because they had to take my blood. Then it was because I had a blood clot in my heart. But one doctor told the nurse to start putting a special cream on my arms or legs way before I had to get the shot so it wouldn't hurt. I really liked that. It made me feel much better.
I also hated when one doctor wanted to get blood taken for something and another would come in and ask for more blood to be taken for something else. I would just fall back and cry and be mad, because why couldn't they have gotten it all at once? So please try to bunch the tests together. It's not easy getting a needle, no matter what people say.
3. Be honest. I get really upset and people make me cry more when they say something isn't going to hurt. I hate getting needles. It hurts. Always tell me the truth. One time a doctor said he was going to remove my PICC [peripherally inserted central catheter] line during surgery and when I woke up it was still there. I was so mad. All the way back to my room I kept saying; "You are all big fat liars." I know you don't want to always tell kids the truth, but it's better than finding out you lied.
4. Ask my permission before you put any part of your body on mine. The doctors almost always asked if they could touch me or press on my tummy. But many times they would be touching me even before I could say yes. If you already have your hands on me, why are you asking me if you can touch me? I often felt like a teddy bear, with people just squeezing me and pushing my body parts. Sometimes when people came in to take my blood pressure I would wake up with something just shoved under my arm. Wake me up before you put something under my armpit! Sometimes it should be okay for me to say no because I may not feel like being touched.
5. Get down on my level. If I'm in the bed, sit down. You can sit down on my bed. Don't stand over me, because it scares me. I get scared because I think, "Oh no, what is he going to do to me?" There was one doctor who was really tall. I wouldn't talk to him because was he was so big. He was really nice but really tall and that was scary. One time he came in and knelt down to talk to me and then I wasn't scared of him anymore.
6. Try to keep the doctors and nurses that come into my room the same. It was really scary to wake up see and a whole bunch new doctors standing around my bed. I would see so many different people I didn't know. When I was on one hospital floor, I had the same nurse, Miss Carol, and she was nice. She helped me take my medicine and needles. She learned the kinds of things I liked to do. When I got a new medicine, she would taste it before she gave it to me. That made me feel better.
7. Try not to wake me up so many times. This was a really big problem for me because I'm not a morning person. Why do you have to wake me up so many times during the night? I would finally get to sleep and have a nice dream and then somebody would come and wake me up. It was a nightmare. I just wanted to get some sleep.
8. Dress normal. Don't wear your white coat. People in white coats scare me. When I saw someone in a white coat come into my room, it always made me think something bad was going to happen or I was going to get bad news.
9. Get cable. If this is a children's hospital, you would expect they would have more children's programs. There were hardly any kids shows on, just grown-up shows during the day.
10. Stop saying it's no "big deal." I didn't like it when people said it's no big deal to get your blood taken. It's a big deal to me. It is a big deal because you're taking something that's supposed to be in my body. It might not be a big deal to you because it's not happening to you.
-- Monique Olivia McIntyre is back at home and attending second grade this fall.
A postscript from Mom: To his credit, the surgeon who removed the catheter from Olivia's arm (see Item No. 3), but not during surgery as he promised, apologized to her for his dishonesty.
Olivia's skin was so sensitive she wanted the catheter removed while she was under anesthesia so she wouldn't feel the tape pulled off that held it in place. The surgeon later admitted he knew he couldn't do as she asked because he first had to ensure the proper working of the intravenous tube inserted during surgery to replace the catheter. Olivia appreciated the apology.