Friday, March 19, 2010

Being your Child's Best Advocate

(Cry warning!!)
Friday’s Featured CauseThis 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  He said the internet held lots of mis-information (especially outdated information) on momo twins.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  There was some outdated info.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



The Grasshoppa:Triplets Plus Two Momma said...

Wow. This is so very true and I am so thankful that you are spreading the word about it. My husband is a critical care nurse in the ER and we were JUST talking about this the other day.

He was telling me about a patient that had a very severe illness and the mom really helped them out because a lot of the behavior she was demonstrating would have been dismissed as "normal" child like stress behaviour, but the mom just "knew" she was off. And she knew this because only a mom knows these things. Because of that and the staffs willingness to listen to her, the child received better care.

It's an important topic for sure.

MsBabyPlan said...

Thanks for sharing Splat! You are very good in your role of mother.

Have a good Friday.

Ms. Diva said...

The older one gets the more one knows that sometimes doctors, principals, teachers, those in charge don't always know best. I am no longer afraid to stand up for myself, my spouse or my children. When Honey was in the hospital for emergency gall bladder surgery, the hospital lost her her for two days. I finally started speaking up and asking questions and going higher and higher until I got the answers I wanted and she was "found" again!! I will never again be silent!!

Shell said...

Awesome post and so true! Question, question, question. Get a second opinion, a third, a fourth. Do what is best for your child and never lose hope. Bravo, lady!

P.S. I hate to hijack your post and talk about something else, but I wanted to respond to your comment on my blog and your email is no-reply. So, I have to do it here. We play just dance every Friday, so yes, join in!

Melissa B. said...

Well-said...I concur, wholeheartedly. SITS sent me by, and I'm glad they did!

OK, Facebook, We're Friends Now...

MamaOtwins+1 said...

I am so glad the series spawned your story.
Doctors and nurses are human like the rest of us. Which means the make mistakes, even when lives are at stake. We have to advocate for our children.
I'm so glad you are able to stand up for you and Seraph.

cheri said...

reading this entry brought back hospital memories. my son was diagnosed with necrotizing enterocolitis (NEC) when he was 6 weeks old and they had to perform emergency colostomy to save his life. i remember asking his team of doctors to repeat to me what was happening, what meds were being administered. i even has 2 nurses suspended because they gave his medicines at the wrong time.

as moms, we have to be voice of our kids when they have not found their voice yet. that way, we give them the fighting chance in life. i mean, why do we have to quit when the babies themselves arent?

i'll be following your story, is that ok? stopping by from SITS :)


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