Options

Mr Owen had a long night.  He was fighting sleep because "everytime I go to sleep, I wake up to everyone changing my bandages or I'm bleeding."  OUCH.  My mommy heart was so sad for him.  We finally convinced him to rest and watch a movie and he drifted off to sleep around 4:30am.  He just lays in bed and shivers.  I'm sure he is part cold because he isn't up and moving around to keep his body warm.  Another part of it is that he got a few small doses of Ketamine yesterday.  Once during the ECMO trial and the other during the cannula dressing change when the surgeon had to place some stitches.  I am still in awe at his bravery to lay there and talk to us while getting stitches in his neck.  There was so much blood too.  So grateful I don't get queasy. 

On the bright side... today is a day of total relaxation!  I requested to have a child psych come by and visit with Owen to help him process everything.  Not that he isn't doing an incredible job on his own, but I think it can only help.  Also, I will work with Child Life to create a daily schedule so that he has some predictability to his day... Meds, PT, School, ect. 

I spoke with Dr Zangwill and he explained where we are at moving forward.  We plan to pick a day, tomorrow or Thursday, and just go for it.  We will do a wean off of the ECMO circuit and see how it goes. 

Option 1:  He comes off ECMO and tolerates it just fine.  We work to get him off of IV meds and on home meds and watch him closely. 

Option 2:  He comes off ECMO but struggles.  This will be the toughest because we will have to decide to transplant vs rehab the heart and we will really be at a crossroads.

Option 3:  He fails miserably coming off ECMO and his heart just can't tolerate it.  We will them keep him on and let him ride ECMO until his heart recovers more or he gets a perfect heart offer.  They are getting offers but nothing is right yet. 

I will know more when we plan to try again.  I just want to make sure his little body is rested and ready for the big day.  SO tonight we will give him a bigger dose of Melatonin and hope that it helps him sleep well.

Prayers for his little spirit to be lifted up.. it's hard to be in that bed and not moving.  None of us knows what it's like to be on ECMO and so alert.  He is just such a Superhero kid.  Everyone is beyond impressed by his courage, thousands are praying for him, and I know that things will be okay.