As I've mentioned, our daughter surprised us at birth with needing to be seen by a kajillion pediatric specialists. Which we did. Her medical mania is coming to a close now; all of her issues are resolving and she is, today, a precocious little lady who is developing right on track. Seeing her, you would never know that she's been the Superstar at many doctor's appointments. And the specialists are now bidding us good-bye: they say she's doing great and we don't need to come see them anymore. She'll have a few yearly follow-ups but she's doing so well that there's no future expectation of more medical drama in the future. Not now, not ever. For this we are grateful.
And I emerge a smarter, wiser, and more empowered mama bear. Here are some ways I've found to be the good patient/parent of the patient. (My brother who is a pediatric dentist has a colorful metaphor for parents who do their medical coordinating well. I certainly can't repeat it here in print. But I'll let you guess . . . )
1. I have learned that I must dress like a professional when I go to the doctor. When I dress business casual, the front office people pay more attention to me. They apologize more when I have to wait. The nurses take more time with us before we see the doctor. When I do see the doctor, he/she seems to listen to what I say with more attention and takes more time to explain the issues at hand. When I show up to an appointment in Mom jeans and snot on my shirt from where a child has sneezed on me, no one takes me very seriously. But when I wear a skirt, nice shoes, and I look professional, the office staff and the doctor seems to treat me more like an equal.
2. I have learned that doctors do want me to be a part of the decision making process. But first I have to prove to them that I am intelligent and informed. I have to do my homework---I have to be willing to ask about medical terms I don't understand. I have to be willing to read medical journal articles until I understand. If I appear to be an emotional wreck, the specialist will stop communicating with me and take over and make all the decisions even if I am vehemently opposed to them. But. If I am calm, rational, and obviously well-informed . . . and if I propose another method of treatment, usually the doctor will give my idea a serious consideration. I just have to prove that my thinking is rational, based on current medical theory, and non-risky. If I can do that, I can have what I want.
3. I have learned that it is the doctor's job to propose more tests and more scans---the doctor wants to do this to have all information possible. It is my job, as the parent, to question whether these scans are necessary, especially if there's a radiation risk involved. We all need to do our jobs. He/she needs to propose a test be done. But I get to ask if it's really necessary. If I'm not convinced, see 4.
4. I have learned that I am the captain of my child's medical team. Me. I am the captain. And I get to decide which doctors are on the team, and which doctors are off the team. Just recently I replaced Doctor A with Doctor B. I made the change because I disagreed with Doctor A's management and Doctor B was a better communicator and has more experience in the area we need it in. Doctor B in. Doctor A out. Me. I am the captain.
5. I have learned that doctors do much better if I hand them a typed paper with all the information on it. Doctors learn through printed words. They are words-on-paper people. If I just talk, I'm getting half their attention: 1/4 is examining my child while I talk, and the other 1/4 is thinking about their last patient or their next patient. But when I hand them something to READ, I get all their attention. I include things like: update since our last visit, my questions, current meds, current treatment plans of other specialists, etc. I make sure I have copies of scans or bloodwork in my hand---a copy I can give to them. I do all the homework I can, anything I think they need to know and anything that I want to know and I type it out. Marvelously effective.
6. I have learned that in cases like my daughter's, eventually specialists do tell us we don't have to come back to follow up anymore. Eventually they sometimes say, "Your child is normal, healthy, and thriving. Have a great life and send me a Christmas card with her picture in it every year so I can watch her grow up."
And that is the best lesson of all. All the medical mania, the questions, the time, the money, the worry, the fear, the uncertainty . . . it's all so that I can give my child the best shot at the best possible life she can have. Doctors sometimes have to be part of this. And to those who have helped us, I tip my hat. And when possible, bid a very fond farewell.
