Thursday, July 9, 2009

Making a Choice

Every decision you make - every decision - is not a decision about what to do. It's a decision about Who You Are. When you see this, when you understand it, everything changes. You begin to see life in a new way. All events, occurrences, and situations turn into opportunities to do what you came here to do. ~Neale Donald Walsch

A friend of mine sent me this quote a few weeks ago, as encouragement about a business decision I am making. Simultaneously, I am preparing for my child to receive a new treatment for a chronic illness. As I've reflected on my decision over the past few days, I realize it begs the question: What are the circumstances and decisions that shape my ability to choose healthcare for my child?

First and foremost, I am a mother. I love my children, and I want the best for them. When I found out my child had a potentially life-threatening disease, I was absolutely devastated. While I'd watched his health deteriorate for months, I did what mothers do best: kept him in the best possible state for nature to help him heal. I dressed his wounds and dosed his medicines, all the while praying and hoping that his situation was temporary. After four long months, he was finally diagnosed with severe Crohn's disease, and although I'd already pretty much assumed that is what was wrong with him, I was devastated. I did everything I could to learn about the disease and the possible treatments for it. I made myself crazy reading not only everything posted on the web, but also peer-reviewed academic journals.

I am grateful that as a nurse, I'm a part of the health care system, as I am able to understand complex information about the disease and I'm connected to people with expertise. But as a midwife, and a person who is passionately believes in non-intervention, I have also sought out alternative medicine gurus and read every crackpot cure out there. We put him on an elemental diet, made sure he had nothing artificial, eliminated everything from his diet that we thought would aggrevate his symptoms. We gave him probiotics, put him in the sun, force-fed him vitamins. Still he lost weight. His wounds didn't heal. His hemoglobin dropped to 7.

As a human being, I couldn't avoid hearing advice or opinions from literally every person I know. I've been asked prying questions about our heritage, our family medical history. Did I breastfeed? For how long? Did we vaccinate him? Did we use antibacterial soap? A friend insisted that he had celiac disease (her mother had it: same symptoms!!). Another suggested it was his nerves. Everybody knows somebody who was healed of Crohn's by taking vitamins, or visiting the Dead Sea, or stopping white flour, or getting accupuncture. A Shaklee salesperson kept me on the phone for an hour, insisting that she was cured of Crohn's by taking $300 worth of vitamins a month. My sister bought them for me.

Yet, none of those things made my child better. For four years we tried everything, and began adding medication after medication as he had exacerbations. At one point, he was on over 20 pills a day. When he finally developed a small bowel obstruction (while on steroids and Imuran), our doctor had a talk with me. " I know you don't want to do this, but I think it's time to consider Remicade."

More journals, more research. More advice. A friend who had a reaction. "You know, it causes cancer." My head spinning.

I've reviewed the options, and come to the only conclusion that makes sense to me. Those other things aren't working. I've done my due diligence. I've tried everything natural, I've allowed the doctor to step up the meds only when necessary, I've done everything in my power to help him heal. And he isn't. So it's time to try something else, something that's got the evidence to back it up, but something that's outside my comfort level.

The midwife in me says it's time to intervene. The nurse in me says it's time to try an evidence-based approach. The Christian in me is grateful that God has allowed a treatment that looks promising. The mother in me says I love him too much to watch him suffer.

It's time.

1 comment:

  1. It's been a long time since I posted this, so I guess an update is in order! My son started Remicade three years ago, and what a wonderful, dramatic transformation occurred almost instantly! He was 17 at the time, almost 6 feet tall and weighed only 120#. He had continuous abdominal pain and diarrhea several times a day despite medication. Once he started the Remicade, he started gaining weight almost immediately; he gained 50# over the course of 4 months or so, and has kept his weight steady ever since. He's had one minor relapse, but his infusion schedule was adjusted accordingly and he has done well ever since. He became pain free after the first infusion, and said "Mom, I didn't realize how bad I felt until after I started Remicade and felt good for the first time in many years". Praise God for our wonderful doctors and a medicine that has finally helped him into remission!

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