Risks vs. Benefits

We met with the local Cardiothoracic surgeon today.  I had forgotten how warm and fuzzy surgeons are.

Did you read that as sarcasm?

It was.

I like warm and fuzzy, but I’ll respect real when it comes to discussing what we discussed today.  The surgeon gave us an anatomy lesson, listed all the things that are wrong with Dolly’s heart on a piece of paper, told us what he would recommend and then told us to go about getting every opinion we could.

I respect that too.  We’re waiting for opinions to come in from Boston and CHOP.  If they all recommend the same surgical approach then we will accept that, weigh the risks vs. benefits, and if we decide to move forward, we will begin to decide where the best place to have the surgery done is.  So far, we’ve met with this one surgeon, at a hospital that only does about 100 peds heart cases a year.  The surgeon himself came from a place that does far more, but this hospital’s Peds Cardiothoracic surgery program is in its infancy.  Do we go with this place because it is geographically closest?  This surgeon has told us he wouldn’t wait, that he would roll Dolly into the OR shortly after the New Year.  I felt urgency, and pressure, to make a choice.

Yeah, I don’t like pressure.   Everyone has been very honest about the fact that this surgery could kill Dolly.  Not the surgery itself, but the days after, when her little body, that has accommodated so well up to now, is forced to adjust to the new blood flow the surgeon will create to try to stop the ongoing damage to Dolly’s lungs.

Wouldn’t I want to go to a place that has a Cardiac ICU, where this is second nature to the nurses that will care for Dolly?  Yeah, but will our insurance pay for that when this technically can be done at the local, world renowned, children’s hospital?  Do I force the issue and waste precious time searching for an answer that might lead us right back to where we started, all the while ticking off everyone who may eventually be caring for my daughter?  Do we choose to do nothing and enjoy the time we have with Dolly, which could be a decade or more, or do we put her through this risky surgery only to have her die in pain?  No parent should have to make these choices.

Tonight I talked to Middle-Middle and Giggles about the choices we’re facing.  They are my two that want to know.  Responsiboy and ShyGuy cope by remaining ignorant.  They’ll cross that bridge when they come to it.  The other three are too small to process it.  For Middle-Middle and Giggles, this is so hard.  I cried.  I told them that while I wouldn’t change one single second with Dolly, that I wished I could take all this away for them.  That this was my biggest fear, watching them hurt, and that fear is coming true.  I’m so sorry guys, not for bringing our precious angel into our lives, but because it has caused you so much pain.

Someone quoted Kung Fu Panda to me the other day.  It wan’t in reference to Dolly, it was someone we had just met, someone who has no idea what our family is living through right now.  The quote has stuck with me.  I like it.  I like that fat, happy panda.

Yesterday is history, tomorrow is a mystery. 
Today? Today is a gift. 
That’s why we call it the present.

–FullPlateMom,
who plans to take accept the present, and try to enjoy all it offers.  

3 Comments Add yours

  1. My heart is so heavy at this time with all the your family is having to endure. Hugs.

    Like

  2. Jennifer P says:

    In our family, I am finding that the experience of loving no matter what is what matters most. God has numbered all of our days. I agree about the Cardiac PICU. LOVE our small city hospital especially since they kind of know us now but there is absolutely no comparison to the cardiac floor in Boston where ONLY heart kids were being treated and every nurse, doctor, and CNA knew what was going on, what to watch for, immediately. There is no “I’ll go call or look it up for you” there. Will be praying for you as you walk the decision road and consult with the other hospitals.

    Like

  3. My heart is breaking for you Becky – MANY MANY prayers from our family (((HUGS))).

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.