Wednesday, August 22, 2012

Surgery Whirlwind Recap

It is so hard to believe it's been almost two weeks since Samuel's surgery!  Partially because life is just busy, but mainly because he is doing so well.  If you were to see that boy walking down the street (or climbing on the couch, or running through the house, etc.) you would never guess that nice big "boo boo" is under his shirt.  Amazing.

Everything has seemed to go so quickly... now that it's over :)  Here's a run down...

We spent eight hours in pre-op the day before the surgery, and Samuel spent most of it being curious :)  

One upside, there always has to be one, is we got to know twin 10-year old boys and their parents pretty well... one of them was having surgery the next day, too, so we spent that eight hours pretty close together.  When everyone started to get a little delirious, Samuel kept us entertained with his I've-been-confined-too-long craziness :)

I don't have any photos from that night, but our good friends Sarah and Bo who live close to the hospital were kind enough to take all three of us in.  (Of course, Omi was also kind enough to stay an extra night so we didn't have to make the drive back and forth at insane hours!)  It was great fun, and an excellent distraction, to spend time with them!  Plus, it made our 5:30am arrival time at the hospital much more bearable with a 30-minute drive vs. 90+ minutes!

 Daddy sad, Samuel happy

 Daddy happy, Samuel sad

Alright folks, what's the deal... you seem a little emotional and somehow I ended up back in this blue gown.  What in the world?!

They took our boy from us around 6:30, surgery started around 7:30, and by 10am got the great news that he was off bypass... hooray!  The surgery lasted another hour and a half, and around noon we got to see our boy.  Even bigger hooray!

Happy daddy after successful surgery!
Crazy, heart surgery at two pounds, and now at 30... the good news is, we should be finished :)

Starting to wake up... Samuel was already filling in missing words as I whispered lines some of his favorite songs and books  :) And notice he is extubated! It happened around 2pm!  Unreal.  My bad lung boy extubated that quickly... never saw it coming.  Always hoped of course!  This was a huge sign of just how well he did during the surgery.

Still not quite awake, but requesting water and wanting to know we were there.

Oh my goodness!  That same afternoon, sitting up!  And making us laugh :)

Because Samuel was back in ICU for the night (a different one, specifically for Peds Cardio), we were back at the Ronald McDonald house.  It was surreal to walk through those doors.  I haven't really been back for three years, but because things were going so well, he was in great hands, and I knew I'd be sleeping in the hospital for the next few nights, we took the opportunity to sleep.  As I walked in the door, part of me flashed back... a bit of anxiety, but once that calmed down I remembered what a great job the folks there do of making you feel comfortable and providing as much as they can so all you have to worry about is your baby.  What an incredible mission!  (I still can't believe I lived there for nine weeks... feels like a lifetime ago.)

Oh my goodness... again!  This is on Friday - the DAY AFTER surgery!  It's hard to miss the expression of my super Samuel, but also note that he's not in ICU anymore!  He was transferred to the floor... we were amazed it happened so soon.

In addition to the heart, of course, we were also pretty concerned about Samuel's lungs.  We still just don't know how they're going to react... case in point being the common cold he got this past spring that sent him in a helicopter to the hospital, sheesh!  BUT, his lungs were rock stars!!!  In fact, the surgeon even said that while they didn't look normal (no surprise there), they functioned completely normal!  NORMAL!  Just amazing.

The next day... Saturday... two days post op... the pacing wires and chest tube came out.  Need I say OMG for the third time in three photos?!

Another cool thing happened when the chest tube came out, besides just getting it out... they did a chest xray to be sure excess gas didn't sneak in when they pulled the tube, and in the process of course got an xray of Samuel's lungs.  Ready for this?  They look amazing!  Now, they do still have lung disease, and don't have O2 sats that are normal yet... but they look like lungs I never thought I would see on this boy.  The cardiologist told me he even triple checked to be sure he was looking at the right xray :)

This might have been the most amazing of all :)  It's Sunday in this photo... the surgery was Thursday!  Yep, he's walking around like the crazy man he is - a little wobbly at first, but once he got his sea legs back there was no stopping him.

In fact, he walked himself down to, and around, the Atrium (best kids room ever)...

... and then right out the door!  On SUNDAY!
To give you an idea, the earliest we even thought was possible - if everything went perfect - was Monday.  Unbelievable.

Another perk of an early discharge was of course seeing George and Olivia, man did I miss them!  Omi, Uncle Jay, and Cousin Madison were absolutely wonderful to take over while we were gone - in fact, I'm not sure G and O missed us at all, ha!  I'm pretty sure they grew an inch in the five days we were gone, man, I don't want to miss a second!  They were great at welcoming Samuel home and asking all sorts of 3-year old questions... luckily when they asked how the doctors cut Samuel's chest, they were content with the answer "medical tools."  :)

The next day George and Olivia took him on a short walk to keep him moving... and he did :)

Since the surgery, Samuel's heart is considered normal :)  The patch looks great (it's made of gortex, isn't that crazy?!), they stitched a few other small holes when they were in there, the pressures have all stayed where they should... and follow up will be routine.  Routine... not a word we usually here... I don't mind it all :)

Sunday, August 19, 2012

It's a Hot Dog Car!

Thanks to the world of Richard Scarry, my kiddos totally believed me when I said we going to see a hot dog car :)  After all, they've seen a pickle car in their books, so why couldn't it be true?!

However, when they actually saw the hot dog car, they were in disbelief... and then absolutely thrilled!  Ha!  It was hysterical!

They loved looking in the windows and wanted to know everything about the car, and were so excited when they saw the cool door come out of the side of the hot dog.  Oh, to be three! 

I'm bummed there's not audio with this photo... waving accompanied by "Good Bye Hot Dog Car!!!" for the entire five minutes it took for them to climb into the car and pull away.

Monday, August 13, 2012

Surgery Success!

I'm still in shock... we're already home from surgery!  A longer post is coming soon, with some pictures that will bring a huge smile to your face, but I wanted to give the good news now!

More details to come too (sorry, I'm completely whooped and needing to crawl into bed), but in general the surgery was a huge success!  Not only does the patch in Samuel's heart look great - no leaks and the pressures look good, but his lungs held up beautifully.  In fact, his lungs acted "normal" :)  This is amazing!!!

We came home yesterday, way before anyone anticipated, and are settling back into life at home.  DB and I are anxious for his chest to heal, but Samuel is a complete rock star and is handling everything with his usual easy-breezy style :)  In fact, to prove his incredibleness, as if that was necessary, he walked out of the hospital yesterday... walked... on his own!  Who does that three days after open heart?!  Go Samuel :)

Monday, August 6, 2012

In the meantime...

I have so much to post!  I swore that once I got caught up, I would stay there... but I can't complain, the things that have kept me from posting have been pretty awesome :)  One of them being vacation... yes, WE were approved to get on a plane!  More about that later...

I'll have to back track and play catch up a bit later, this is a big week for our family and I know the blog is an easy way to keep everyone in the loop.  We will be at pre-op nearly all day Wednesday, and then Samuel's heart surgery is on Thursday morning.  (Yes, it was originally scheduled for two days earlier, but an emergency in peds cardio surgery (not us!) meant everyone had to shuffle a bit.  Sitting on pins and needles for another two days isn't fun, but it beats being the emergency - we've been there, and that's definitely the worst.)

I talked a bit about this heart surgery in this post, but to be honest it was a long post and I kind of buried it.  Looking back, I'm wondering if I buried it intentionally.  I was, and still am, having a really hard time with this surgery.  I cried a lot that day, and I've cried a lot since... I also think I might be a bit angry.  I don't know if that's the right word.  Not angry at anyone, this isn't anyone's fault, but I just hate this and I'm so frustrated that this has to be so difficult.  I know that sounds silly, but this was supposed to be easy as far as heart surgeries go.  I know that he'll be fine, I just absolutely hate that he has to go through this.  He's been through so much, why can't this surgery be easier.

Without rewriting the post I linked to above, this was supposed to be something we could fix in a cath lab.  George had the same hole fixed when he was a year old, and it was a very long procedure but it was not invasive and we were home in no time with no formal rehab.  At our last appointment we knew we'd be scheduling surgery (it's time), but it turns out the hole is too big to be fixed in a cath lab.  Basically, they can't place a coil to fill the hole like they did with George, so they'll have to manually patch the heart... which means they have to stop it and put him on bypass... which means they have to open up his chest.  Even typing it makes me feel like I have a 1,000 pound weight on my heart.

Like I said, I know he'll be fine... I don't know why this one is hitting me so hard, maybe because I saw DB go through open heart last summer and I know what we're in for, maybe it's a normal parent response, and maybe I am just actually losing it a little bit ;)  Thank you for your kind words and prayers, I can't wait to blog about how fabulous Samuel is doing!

Go Samuel!