I started writing a clever post to wrap up 2009, but I wasn't very clever so I stopped. I thought about writing an inspiring post to launch 2010, but I'm not very inspired, so I think I won't try. I do, however, have a random thought on my mind, so I'll try my hand at communicating it.
I've been contemplating some of the lessons I learned in our medical journey with Abby. Many of you won't relate to these thoughts right now, in this season of life, but I'm writing this on the off chance that when you do find yourself in a medical situation, you might remember and have freedom to be a bold advocate for yourself or others.
Several people have mentioned lately how persistent I was in pursuing a medical solution for all of Abby's issues. My first response is that I don't feel like I did anything so special. I just did what any parent would do for their child. And I did the best I could to listen and respond to the promptings of God. But when I look a little closer, I realize that I'm not the same person I was three years ago - the journey with Abby changed me - and what seems "normal" now, certainly was not normal then. So, on reflection, here are a few medical lessons I've learned that might be of help down the road:
1. Follow your gut. A long time ago I took one of the boys to the pediatrician, and he didn't really see anything wrong, just normal kid cold stuff. I apologized for wasting the Dr's time, and he said something that I have always remembered. He said, "Never apologize for bringing your kids in. Trust your gut. A mother's gut is right 95% of the time." If you think something isn't quite right, don't let doubt or feeling foolish stop you from seeking help and asking questions.
2. If your appointment is anything other than a routine check-up, take someone else with you. Two pairs of ears are much better at remembering what was said. Also, I found that my initial responses were often emotional, and I couldn't think of the right questions on the spot. Jeff was way better at listening and asking questions at the moment.
3. Write your questions down. I know other people have said that. I just reiterate it because it is so true. When you go to an appointment, especially with kids, you have so much going on - waiting room, co-pay, keeping baby happy while you wait for doctor, crying baby when doctor finally comes in. . . it's hard to remember what you wanted to ask, have it written down.
4. Write down what the doctor says, or ask them to write it down. Sometimes they use big words and explain stuff but you can't take it all in. Write it down and look it up on the internet later.
5. Don't let yourself get carried away with research on the internet. There is a point to which it is helpful - gives you knowledge, background, and an idea of what's going on. There is another point at which it is extremely unhelpful - horror stories, terrible "what ifs". . . don 't go there. Make yourself use it for the help, and turn it off before it makes you a fearful wreck.
6. Use the best specialist you can get. This is perhaps the hardest one. We often think that our doctors are the professionals, and that if they refer us to someone, that must be the best person for us. We don't want to hurt someone's feelings by pursuing a second opinion or a different specialist. I know, that was one of the hardest things for me. I felt like I was being disloyal if I questioned what a doctor said, but God, in His grace, gave me the boldness to get over it. If He hadn't, Abby would still have a 45ยบ head tilt.
7. If you're dealing with your child, insist on a pediatric specialist. Drive as far as you need to in order to get to a pediatric specialist. It's not that general practitioners are incompetent, it's just that pediatric practices deal with kids all day every day. They have more experience, and that experience adds up to better, more comfortable, care for your child. This is the one I feel most passionate about, because I've had several specific experiences where the pediatric focused location was hugely better for Abby. From x-rays being done in a quicker and more kid friendly way, catheters being inserted and removed in a much more expert way, physical therapy that was more experienced in Abby's issues, to a wrong diagnosis being reversed and Abby's longest standing problem being solved. It was all the difference between technicians, therapists, nurses, doctors and surgeons who worked daily with kids, versus those who are excellent practitioners, but deal mostly with adults.
8. If you're dealing with your own illness, it can almost be harder to advocate for yourself and justify pushing for a better specialist. However, I've learned from watching my mom, and others, deal with cancer, that it is imperative to find a doctor you have 100% confidence in. Don't hesitate to drive or fly to a bigger town. Get several opinions. Research your options. And go with the person/office where you feel most confident and comfortable. Don't worry about whose feelings you might hurt, most doctors understand that patients pursue second and third opinions.
9. The bottom line is that you are your own best case manager. No one else will keep track of the case like you, and you alone will have the best grasp of the details. We often think doctor's offices keep our files and so we don't need to. . . but they have 100's of patients. It's easy for a few to slip through the cracks. We need to keep track of what we're told, do our research, ask questions, seek the best specialists - through research and word of mouth - and not be afraid of stepping on toes along the way. This is our health, and the health of those we love, at stake, and we can have the freedom to be bold.
Those are my thoughts for today. It's o.k. if you disagree. I'm sure everyone's experiences are different, and may not warrant such specific pursuit of "the best" - just thought I would throw it out there for you to mull over.
And by the way, Happy New Year. :)
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