Day 10

August 9th

Well, we made it into double digits and it doesn't look like we are going home any time soon.  But that its the tricky thing about this type of recovery, it can change in a day!  Back up to last Saturday...Stephen had hardly any output from his chest tubes the previous days that they felt confident enough to pull them both.  Overnight things took a turn and a drain was replaced by Sunday afternoon.  The pleural effusions keep coming and going with no definite answer as to what is causing them other than it is a typical side effect of this surgery.  We were excited when he had very little output yesterday (50mls total) and was dry overnight...but that excitement ended with a bad chest X-ray.  It turned out the tube was clogged which caused a backup of fluid, and when they got the clot to move today, over 250mls came out =(

As for the pacing, it has been going back and forth.  Today he spent almost the entire day in sinus rhythm on his own!!!  Praise God!!!  BUT that doesn't mean much when it goes back and forth.  We had one of the docs from the surgical team come and talk to us.  They wanted to know how we were feeling about the permanent pacer and gauge where we were at with it.  Obviously we are going to defer to their expertise, but I want to be confident in our decision.  If he keeps going back and forth he will need it no doubt.  If he can have a few days without leaving sinus rhythm I would feel more confident in holding off for now.  When I asked how soon they could do it she told me they are holding a spot for tomorrow, or can do Saturday or even Monday.  Ughhh...I am not ready for him to go back into the OR yet!!!

And the hardest part is just not knowing why it is doing it.  The pacing issues could be causing the draining issues, the drainage issues could be causing the pacing issues...so which one do you try to fix first?  Please, join us in prayer for wisdom.  Pray for his surgeon and his incredible team of doctors.  Pray that they would have insight into the best solution and that both Joe and I would have peace with it.  We really love our surgeon!  I got to thank him again for his care and concern as we stopped and chatted in the hallway.  I asked him if he ever takes a break...he is around A LOT!  But he was honest and said that when you have a complex congenital heart case like Stephen's you just can't stop thinking about it.  He actually came into the hospital at 5 am after the original surgery because he could't sleep and wanted to check on him.  That is how much he cares about his patients!

So as hard as it is to be in double digits, I am grateful that his days are getting better.  He is a CHARMER!!!  I mean how can you not fall in love with this kid?!!

I was showing our new nurse a picture of all the kiddos and with that showed her a picture of his lips before this surgery.  He asked me to take a picture so he could see his lips now.  I took the one below and he said "Oh yeah!"
I mean look at the difference...

Today was another great day for Stephen.  He was in little to no pain.  He only took Tylenol once and is on no other pain medications.  He went on 3 walks, sat in a chair most of the day watching a movie or playing and the cutest thing ever...he went to the play room (for the first time) with his new buddy and played musical instruments together!  It was beyond precious!!!

We ended the day tucking in Mike Trout and Karen (a gorilla from the San Diego zoo who had heart surgery!)

Tomorrow Joe will be going un to Brea for a training at his work so it will be my first day flying solo.  Please pray for it to go smoothly.  I would love for it to be uneventful!!!  And the best part, he will be bringing our older 3 kiddos back with him to stay a few nights with us at the Ronald McDonald House!!!!  Stephen is SO excited!!!!

So recap on prayers requests...
1.  Drainage to stop
2.  Pacing to resolve itself...or wisdom for both the doctors and us on how/when to move forward
3. Tomorrow to be uneventful as I fly solo
4.  Continued peace, comfort and strength for our little man!

And Praise God, Stephen has been through SO much yet he is still joyful...that was a HUGE answer to prayer!  I didn't want this hard experience to rob that joy from him.  So we thank God for his contagious smile and laughter...and those awesome dance moves!!!!