This post was sparked by 3 Boys + 1 Hubby's Friday's Featured Cause: Jack of Hearts. It's a sad story, but brings up some important points. You are your child's best advocate. How do you know when it's time to get a second opinion or a new doctor?
I don't always agree with Seraph's doctors. I read as much as I can about similar heart conditions. (I stop when I'm crying too hard. There's so much sadness out there!) I ask about everything. I look at the xrays. I ask how meds work. I trust my gut. Sometimes we have to agree to wait and see what happens. But if I ever felt like the doctor was ignoring my concerns, I'd ditch him in a second!! I know many of the other doctors and surgeons now. I would interview and chose the one that matched our needs best. I know some people have to change children's hospitals (usually out of state). I don't see that happening to us.
The day I was diagnosed with monoamniotic/monochorionic (momo) twins, my OB told me NOT to go home and read anything about it on the internet. Seriously?? He said the internet held lots of mis-information (especially outdated information) on momo twins. He didn't want me to stress. Ha!
Obviously, I hit the net for info as soon as the kids were tucked into bed. There was some outdated info. There was also a completely FANTASTIC support group. The group took me in, told me what to expect, and (most importantly) provided me with the Heyborne Study. I used this study to school my doctor and strong-arm my insurance company into a specific path for the best chance of survival for momo twins.
That was my first experience being my child's best advocate.
Then the doctors told us Seraph had a heart defect. They explained the surgeries she'd require. They directed us towards an internet support group.
As much as I can stand it, I read stories of other heart babies. I hope for the best, but if things don't work out, I want to know what to expect and what to avoid. My heart goes out to Jack-of-hearts parents. His doctor's behavior was horrific!
When Seraph's doctors explain something, I pause and ask myself if I could explain that to my husband. If I can't, I know I didn't get it. Then I say, "I'm sorry - I know you just told me this, but it fell out of my head. Would you tell me again?" I ask questions. I take notes. I repeat it back to them and ask if I got it right. Doctors know I'm in shock. They are patient with me.
I double check each prescription. I ask what the abbreviations mean. I make sure it matches what I expect it to be.
Nurses are great. Except when they're not. Some are lazy...or jaded...or had a bad day. Some don't wash their hands enough. Some watch too much TV. Most nurses are OK. Some nurses are demigods.
Some doctors are.... /sigh.
There have been times when I did NOT agree with Seraph's doctors and cardiologists. I always ask, "What should I be hoping for?" when they give me bad news. That way, I know exactly what to pray for.
Once some of her doctors disagreed on the best treatment. The doctor *without* the final say, mentioned to me later that Seraph's main doctor had said something like "why bother fixing it, she'll just get worse again". We chose to fix the problem. I'm annoyed because I KNOW her doctor would NEVER say that where I could hear it. I felt manipulated.
It's a big mess. The doctors do what they really think is right. BUT...they've seen it go wrong before. They're the first to get blamed if expectations weren't realistic. And sometimes, they're lazy or negligent or just plain wrong.
Know your baby, know her problems, warning signs, treatments, ask questions, read as much as you can, find out what problems other people had.
Seraph came home on palliative care last year. The doctors told us she was going to die. She did not. She thrived at home - a loving environment with ONE continual care provider.
Sometimes Mom knows best. Trust your gut. Keep the doctor (and yourself) in the loop.
Wishing you and yours good health and happiness