Day 2 and 3

I wish I had the time (or energy) to put my thoughts and emotions in written word right now.  I have seen and felt so much.  But honestly, the days are long and given fully to my sweet boy, and the nights...well my brain just doesn't work!   I thing I have got around 8 hours of sleep the last 3 nights combined!  It is amazing how God gives you the strength (and energy) to get through the valleys.

A lot has happened since Day 1 and it is best shown in pictures =)  I need to figure out how to get the videos up...but until then, here is Day 2 & 3!

DAY 2 (Wednesday August 1st)

At 6:30 am Wednesday they got him into the chair to sit.
This really helps drain the excess fluids in his body after the surgery.  You can see how tired he was from that move!

He really couldn't talk much (still doesn't but it is getting better) so he said
"when I open my mouth that means put ice in it".  And for much of the morning
 (before he was allowed to drink) he would just open his mouth...it was pretty sure!
Once I missed the signal and got a "mom!" it a quite, but quite serious, tone =)

A sweet, unsolicited, smile!!!

HIs first popsicle...EVER!!!  He is a funny kid and has NEVER liked popsicles.
BUT, he wasn't allowed to eat or drink...so he gladly ate this!

Just before a little sponge bath!  To explain the wire/tubes.
The top right circle (you can see well in the picture above this one) is a TT line (trans thorasic) that goes right to the heart.  It will stay in until we are ready to go home so they can pull blood work from it instead of poking him AMAZING!  He also had a central line in the left side of his neck which was removed in the afternoon on day 2 (Wednesday) but can be seen in the other picture as well.  Nasal cannula to supply oxygen ( I think as of today it was down to 1 liter).  Little white circles connected to wires are leads that show heart rhythm etc.  The white boxy thing to the right of his belly button is the temporary pace maker wires which are currently hooked up to an external pace maker that sits on his bed and is fully pacing his heart (he has a junctional rhythm if not).  You can follow the wires form the white part to where they entire his skin to his heart.  Directly under his chest bandage and to the right of the pace maker wires are 2 chest tubes to drain all of the excess fluid in his system.  On his left hand (but right side in picture) he has a peripheral IV in top and an arterial line (which was pulled out today!!!) to the side.  And on his right hand he currently has another peripheral IV which they tend to use to administer some of his pain meds.  It is quite a bit of stuff!  But it is amazing watching each one come off!!!

This is one of my favorites!  His smiles are still few and far between, but this one was the best!
We had just set up his bed and told him the Angel game would be on soon!!!  This was his reaction!!!

And then this was how he looked during the entire game!  Poor guy was EXHAUSTED to say the least!!!

His wonderful cardiologist form Rady's (Dr. Davis) stopped by for a short visit to check up on him.
We truly were blessed to have him on our team these past 6 years!

And then he went back to snuggling his Mike Trout doll and sleeping!

Not much happened Day 2...mainly a LOT of sleeping!  He did get up twice and sit in a chair for a few hours...but that was the extent of it.  

DAY 3 (Thursday August 2nd)

Today was moved from the CVICU (Cardiovascular Intensive Care Unit) the cardiac step down unit...a VERY good sign!  One of the Pas said he was hands down the BEST patient she has ever seen 2 days after the Fontan...PRAISE JESUS!!!  It is hard to believe its only been a little over 48 hours at this point since he came out of surgery!

He has defiantly won the heart of his nurses.  His nurse in the CVICU was sad to see him go (and wanted to go with him) so she came by and visited through the day =)  

The other big accomplishment today was walking!  The first time was hard to watch...he was in so much pain.  But he did it!  They actually has to slow him down.  He knew he had to make it once around the pod and he just wanted to get it over with!  I did a mini figure hunt to try to make it less painful..didn't work so much the first time around...but the pictures can show you that...

Working through the pain.  Such courage and such strength and such a young age.
Open heart surgery hurts.  It just does.   And the most painful part is the 2 large chest tubes (they get smaller then the part you see in the picture) that enter in above his belly and basically sit on a sensitive lining of his lungs (pleural space).  I can't even imagine.  I am not sure I would tolerate the pain as well as he is.  But grateful for God's provision through it all!

And then when he returned for that walk he was OUT!  

And I still can't get over those sweet PINK lips!!!

The 2nd walk went SO much BETTER!!!  I have a better video to show it (but don't know how to get it on here).  He actually smiled and giggled a small but as he spotted the mini figures.  The first round had Star Wars figures and this one had some Ninjago...he gave a little laugh when he found Lord Garmadon!  He even walked through all 3 cardiac pods this time...so a much larger loop.  He stopped once for a little pain, but overall tolerated it SO WELL!!!  He is still a bit too exhausted to do much of anything.  He couldn't even put his figures together yet, but that will come with time!  And he does have quite the entourage for these talks!  One nurse has to be in charge of his oxygen tank, 1 has to hold his chest tubes drainage tanks, and the other has to maneuver his IV pole...and then Daddy of course holding his hand =)

Side note...the male nurse on the left is a Boston Red Sox fan...we still liked him though =)

Overall day 3 was a big day.  He made it out of the ICU and went on 2 walks (HUGE) and even ate a little chicken and about 12 pretzels (compared to the 6 saltines from yesterday).  

Also...huge shout of of thanks to all of those who have sent us Uber cards...they are coming in SO handy!  It is not easy being gluten free at a hospital.  Most meals at the RMH I can't eat so today my one and only meal came from a wonderful Cuban place we found.  This picture doesn't do it justice...but oh my word it... was delicious!  And delivered to the hospital for us...AMAZING!!!

Main prayer requests now...

That his heart rhythm would return to normal.  At this point it feels like it would take a miracle...but we know that is possible.  The first 2 days they seemed confident it would, today not so much.  There are a lot of reasons why they are thinking this, and I get it.  With the way his specific heart is set up we were told for day one (like in the womb) that he had a higher chance of needing one put in one day.   Still...lets pray his heart can beat correctly on it's own!

Pain management.  Stephen internalizes so much of his pain.  Rather than speak u he just shuts his eyes and tolerates it.  It can be hard sometimes to know if he is sleeping, or just huts.  Pray we can stay on top of the pain so his eyes will be open more!  

He did develop a pleural effusion (excess fluid built up around lung) so pray that it would drain quickly and go away without causing any trouble.  These are very normal after this surgery, but can leas to lengthy hospital stays and difficult edit restrictions!  

Rest for both Joe and I.  Sleep doesn't come easy when this is your current reality.  But prayers that we would remain healthy and somewhat rested is appreciated!

Thank you all for waking this journey with us!!!  We appreciate your prayers SO SO SO much!!!!  God is good and we know he will use all of the this for His glory!

PS  If anyone wants to text, message or email encouraging videos for Stephen I am sure he would LOVE them!  We showed him one today and it lit up his face!!!