What a Goofy Goober.

Max, August 2009, Coarctation.  What's a little heart surgery?  Who needs all of their aorta anyway???  Look at that smile.

"Let's Start at the Beginning. A Very Good Place to Start..."

Here's a funny for you.

We're pretty healthy people.  I let the kids eat dirt.  We don't use hand sanitizer.  We don't over worry about germs.  We don't really get sick often.  None of us have had hospital stays.  Well, except for the coarctation.  Of course, Max wouldn't remember that.  He was only 3ish months old when he had it repaired.

But then there's me.  I'm healthy.  But I have stayed in the hospital before.  Three times Max can remember...  and each time I came home with a...

baby.

Tuesday during some quiet time, I let Max hold Axel.  He loves this and they both giggle at each other.  Well, I joked with Max, "Hey, when you go to the hospital are they going to send you home with a baby?"  Max looked in my eyeballs and very seriously said, "Yes."

Ya'll, I could tell by the yes that he meant it.

Oh my Jesus, how did I over look this???

I've been so busy wondering about how to explain the big complicated things that mayhaps I need to start at the beginning.  The VERY beginning.

When I told this to the wonderful scheduler-lady at Children's Healthcare, she laughed and quickly added, "We'll have the Child Life Specialist call you".

Um, yes please.

We've Got a Date.

So we finally scheduled.  The very first thing the kind lady asked me was, "When were you hoping to schedule?"  I had not expected to be asked like that.  Any day is equally inconvenient and there will never be a day I WANT to hand Max over for open heart surgery.  I naively told her I would need at least a week to prepare everyone...  She gave a little chuckle and told me they are now booking into August.  This means he will be missing some school.  This isn't so awful, crazy bad... I mean, we are quite used to the whole homeschooling thing.  With all his downtime, I assume we'll just keep learning anyway.  What else are we going to do??

I also asked her opinion of how long Max may be in the hospital.  Wow, was it different from what his cardiologist said.  She just laughed and told me the cardiologists usually over estimate a great deal.  It goes something like this:  1 night in CICU (parents can't spend the night in there... there's a story Max loves where Curious George is in the hospital and George cries when The Man in the Yellow Hat has to leave... thanks, George), 3 to 4 days or sometimes 5 to 6 days in the hospital.  Then... get this:  1 WEEK before he's up and running around again.  This is crazy different from the SIX weeks the cardiologist mentioned.  4 to 6 weeks until he can do PE again (because his breast plate will need this time to heal).  So while I still don't, you know, want to stop his heart and all, the recovery time isn't AS BAD as the picture the cardiologist painted.  I agree with Jason though, having a date somehow makes me a little more nervous... Now it's for real.

Anyway, I guess you want that date, huh???

Pre Op... all. dang. day.: August 6th
D-Day:  August 7th

Oh, Lordy, Lordy.

It's Been Real, It's Been Fun...

Yay!  Kindergarten is over!  We enjoyed it so much... we're going to do it again next year!  We're hoping that maybe with another kindergarten year under our belt, Max will build some confidence and progress further into the important foundational skills that are so important in early childhood.  I'm pretty confused about what we do if he's still in recovery when school starts.  But for now we are just going to relish in the fact we do not have to get up at 5:45 every. dang. morning.  Well, I mean, *I* will relish at least.  These goobs still get up at the butt-crack of dawn...

So What Are You Doing This Summer?

So, sixish years ago, after Max's coarctation surgery, I was told he had a blah-blah-blah in his blah-blah.  Once your newborn goes through heart surgery and they say  "Abra-ca-dab-ra, he's fixed!", you really don't process much.  At least, I didn't.  I knew his aorta was fixed and some time around the age of five, we'd have to start looking into the dooma-flach-y that was swimming around back and forth near his aorta.  I filed that away to worry about when he was five.

Here we are at six.  We've been busy.  Speech therapy.  Occupational therapy.  Don't-hit-your-siblings therapy.  And then the big one hit... Autism.  Yearly cardiologist appointments reminded us the thing was still flapping around in there, but numbers and gradients and scientist-y things were still all okay.  But for the last year we have been hem-hawing around the idea that this thing would need some lovin'.  Now it's no longer The Dooma-flach-y.  It's the Subaortic Membrane.  It's a thing.  And now it needs repairing.  Next hurdle.  Lately he's been one sweaty monster and showing signs of fatigue.  Here and there we've had some chest pain... not an easy thing to watch.

So.  If you are all science-y and want the nuts and bolts of the thing, here are some good websites:

http://www.mottchildren.org/medical-services/ped-heart/conditions/aortic-stenosis
http://emedicine.medscape.com/article/893415-overview

But besides that stuff, here's what I know:  They are going to stop Max's heart to do the surgery.  This may all sound normal.  Doctor's do this all the time.  But this is scary as hell to me.  And thinking about preparing him while I am not prepared myself seems impossible... or at least... stupid hard.  Recovery time is 10 days to 2 weeks in the hospital and about 6 weeks at home.  Sounds like this is our summer folks, so have a beer on the beach for me.  Our doctors meet on Mondays to discuss their cases and then their office begins working on scheduling .  Since last week was Memorial Day, I imagine that meeting took place two days ago.  I'm expecting a call to schedule all the fun any day now.  

Thanks for reading my ramblings.  Stay tuned for all things Max-ish.  This'll be my go-to for keeping you fine folks informed!