What A Difference A Day Makes

Saturday

We are in the step down unit! Yay! Ima take my shoes off. Can't promise I won't be in jammie pants soon. Classy, right? He's eating then we'll open the big box of surprises from so many of you. I can't wait. From here, we'll just be getting better and better. 😀

Good Night.

So Max finally got his breathing tube out about an hour ago. What an experience. Not one I hope to have again. Once it was out he did terrific. We're off to get some sleep now. Hopefully Axel got the memo that we'll be needing more sleep than we got last night! G'night everyone. Thank you. Thank you. Thank you.

He's Done

He's done, peeps! Dr. Kanter said we caught the situation before it did some greater damage. He feels very good about the surgery and confident in the outcome. We're going to grab some lunch while the nurses finish up and get him transferred to the cicu. I'm hoping I can keep myself together as I see him for the first time.

Update

Just got an update and everything is going well. We just wanted to say a big thank you again for all the prayers and well wishes. Looking at facebook today, I've gotta say, I feel a bit like a celebrity. Please, please, please if you shared any Max statuses or blog posts with your family and friends, thank them for us for all the prayers. There are so so many and we are thankful for each and every one. This morning has been so peaceful and calm and we have every one of you to thank.

Pre-Op Shenanigans.

Oh my gosh, ya'll! I'm tired. Tired! Pre-op was today and just ridiculously long. I have to say though, it went pretty dang well. The biggest thing Max has worried about during this whole process has been shots. But then the little monster sat down to have blood drawn and didn't even flinch. Didn't. Even. Flinch. He had, like, one million questions about why they were taking his blood, but I'll take that any day over knock-down-drag-out-aw-hell-naw cray cray. Thank you.

Anyway. Party at 6am tomorrow, ya'll. Third floor waiting room. Egleston. I'll be the one either pacing or sleeping. Then again, I guess everyone paces or sleeps in that place. It could make you crazy thinking about the things that go on in that building in a day.

The actual surgery should take 3-5 hours. Of course, there's so many more things they do and have to accomplish before I can see him after surgery. We're looking at him being away from us for quite a chunk of the day tomorrow. I'll update when I can.

Thank you again for all the kind words, thoughts, and prayers we've received all along our journey. We are so appreciative of everything that has been done for us. We love you guys!

The One In Which I Say Thank You.

Let us have a moment of silence for my laptop, shall we?

...

It has gone to the great beyond and blogging is not the same on the phone. My apologies.

Anyway.  Wowzers, people. I don't know where to start and no one has ever, ever accused me of being eloquent. So here it is.

Saturday evening my sister Vicki beckoned me outside where she popped open the trunk of her car. Inside was a huge box of well wishes, gift cards, rolls of quarters, get well cards, gas cards, and Starbucks cards. I am overwhelmed with gratitude.

Thank you so much to all of you who joined Vicki's super sneaky Facebook event to help prepare us for Max's surgery. You guys thought of things I hadn't thought of myself. (Or things I had thought of, but thought I'd have to do without for a week. For example: COFFEE?!) To know that we do not have to worry about the details now and can focus on Max is the greatest gift you could give to us. Seeing all the Curious Georges and Daniel Tigers in that box was so heartwarming. There are just no words adequate enough to tell you guys how loved you've made us feel. Hell, I don't even know some of you people and you've been so amazingly generous to our family.

I want to be you guys when I grow up. I want to do these things for people. I want to be the sort of person you are. Warm and generous and kind. We will pay everything you have done for us forward. We will use this to propel good into our world.

Thank you.

Meal Train!

It has been brought to my attention that a few people would like to help out with food while Max is in the hospital. To organize this, I've set up a mealtrain. I am all about organization! Now I just need to figure out how I'm gonna eat at the hospital. Eating out for every meal is going to get pricey. If you've been there, done something like this, send some tips my way!

Thank you again for all the kind words, thoughts, and prayers!

Ducks In A Row?

We're still here!  Still waiting to just do a little heart surgery.  We've had some major things happening here at the Wallace Abode.  Our little people's oldest brother, Caleb, has come to live with us.  A dream we've had for years and years!  Every one under one roof!  There's new emotions and new adventures to be had as everyone adjusts.

Meanwhile, the littlest of the Littles have been doing lots of activities to keep them busy learn their letters and fine tune some skills.

 

I have been frazzled with all that this summer has brought on.  It has been an interesting few months. Max reminded me the other day that Daniel Tiger would have me "take a deep breath and count to four".

Thank you.  Daniel.  Tiger.

Evidence of frazzle-ment in the house:

Max is actually in this picture.  Zander asked for stamps.

Heartwise though, this thing is getting harder and harder to watch.  About two weeks ago Max was running around with Lola and Finn when he suddenly collapsed on the floor.  He was cold and breathing so heavily.  His heart was racing and it was rather scary.  It took him some time to rest and he was able to get up.  It's happening a lot more often now.  He just can't run around with the other kids.  We are all keeping a closer eye on him.  I hope to remember these moments when I have to say goodbye before surgery, to remember this is for the best and it will return him to his crazy playful self.  That moment scares the shit out of me though.  There's no better way to say it.

Anyhow.  Keep us in your prayers.  Labor Day is my goal at this point.  After that we will be at New Normal.  The ol' ticker will be repaired.  Caleb will be settled in.  The steps to be taken to get him here will be complete.  We'll have more answers about Jason's bout with Crohn's.  Ima take a nap on Labor Day.

Thank you to everyone who has been praying for us and asking what they can do.  It truly means the world to us.  When I get my ducks in a row (pretty dang literally) I'll start calling on you guys and updating more.

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!