I Want to Be an Activist

Since our experience with Brody, I have really experienced an internal push to become an activist.
However, I've gotten push back at every turn.

I wanted to improve the experience for parents and family at the Hospital for Children.  The facilities are top of the line and the medical care was excellent.  However the facilities never were built for the family members staying with the children.  To the degree that there aren't enough toilets and mothers of infants, though expected to express breastmilk, have no where they are allowed to do that.  Social workers, counselors, support groups and ChildLife workers only become accessible *AFTER* surgery.  I spoke with the various support and advocacy groups and found they don't want volunteers.  They don't want advocates.  They want money.

I wanted to help bring programs that exist to the local hospitals.  I contacted several non-profits that offer emotional support, parent networks, and even little things for the children.  Again, they don't want advocates.  They don't want letter writers.  They don't want people even to go out and do fundraising campaigns.  They want to hear from people who are going to write a check.

So I'm not sure where to go with this. If they don't want help, only money (which I don't have in the amounts they want) I don't know what to do.  I am even willing to help them GET money, by using my events management skills and a few connections I have to organize fundraising events.  I'm not talking car washes.  I'm talking galas, banquets, and other high dollar moneymakers.

I can't help but think that the resistance to help other than a check is why awareness of CHD isn't really out there.  Yes, everyone has heard of a kid who had a hole in his heart.  That kid seemed mostly okay but got out of a lot in gym.  And this being the sole source of knowledge is why people don't think CHD is that big of an issue.

They don't know it's the #1 birth defect.
They don't know that it's the #1 killer of infants.
They don't know that it's a complicated and long list of defects, many of which are (as the cardiologist told us about Brody's) "not compatible with life."
They don't realize many simple, inexpensive, and non-invasive tests exist for newborns that would save lives but are not used because no one has decided they should be.

Instead we have concerns about other defects and costly tests for them when those birth defects and genetic conditions are far more rare and far less likely to result in the death of your child.

Never Quite Relaxed

It's been months since Brody's open heart surgery.

He's been given the all clear to go to every 6 month check ups.

Our incidences of fever and infection have only been in his ears and eyes (ugh, pink eye!) and a quick acting virus as are normal for small children.

He's recently caught up developmentally, too.  Until a few weeks ago, Brody was much like a very young infant rather than one closer to being a toddler.  He couldn't roll over, he couldn't sit unassisted (and still fell over rather quickly), he couldn't crawl...he couldn't do anything.  All milestones we had reached prior to his OHS were gone.  Then about 3 weeks ago he had an awakening.  He has learned to clap, wave, roll, sit unassisted, crawl, and pull to standing all in that short time.

But I don't feel safe.

I know that the complications other than infection were ones that would be months or years down the road.  Scar tissue could impair the electrical pathways obstructing the sync of his rhythms permanently.  He'd need a pacemaker.  The pericardial patch could get something wrong with it.  The means used to correct his TAPVR could show to be insufficient as he ages and his heart gets more of a workout.  
I will always worry about infection settling in his heart.

I am also worried about some feeding issues that have cropped up post-operatively--including a lot of vomiting.  I worry something was damaged.

I guess it's just normal to feel this way.  I am no longer ever going to naively take my children's health as a given.

We've had Sasha checked as well since he recently showed to have a murmur.  God help me, it scared the crap out of me to get that news again.  Thankfully, his murmur is like 90% of murmurs.  It's nothing more than a noise.  His heart works perfectly and is built exactly as it should be.

All's Well

Brody is fine.

The bad effects of his anesthesia are finally wearing off and he can sleep at night without screaming in terror. 

His incision is a closed pale pink line and looks wonderful.

We have 2 followups to go, but I think it should be okay. 

Work is keeping me busy.

Sasha goes back to preschool tomorrow.

Live is pretty good.