Hi all, broke away for a quick update.  Cody's doing better - his flu broke overnight and is hovering at 101.5.  But it is starting to creep back up which we need prayer for.  His fever is directly related to his seizure load.  His blood pressure dipped too low last night which was concerning but it's back on the brink of acceptable right now.  He's having a deep gunky cough which is also worrisome.  We are hoping we've dodged the bullet of respiratory distress and it seemed so - but this cough is definitely getting worse.  He's tolerating a few ounces every few hours and is finally peeing which is also good.  No sign of fluid in lungs, also good.  He's taking zofran to keep him from vomiting, Tamiflu for the H1N1 virus, motrin for fever, seizure meds - so he is loaded and his little body is processing so very much.  His seizures (thankfully) have not gotten worse - no doubt thanks to the zillion emails and notes I've received from those who have bruised knees in prayer.  How can we ever thank you?

Cody's eyes are half mast - but he doesn't sleep often - he just lays there in a complete trance - unresponsive, floppy, lifeless.  There was one shining moment today though when he opened his eyes, sat up, and raised his arms to tell me he wanted on my lap.  I was in complete and total Heaven.  He squished his cheek against mine for a minute, then picked up his left hand to blow a raspberry against it.  Unfortunately his hand was taped to a slant board with IV tubing sticking out of it and an IV drip going in.  The hand was just too heavy to lift up to his mouth and he made a move to switch to try to raspberry against his other hand but just lost the mojo and flopped back in my arms - back to lifeless Cody.  But as I told some friends, I felt like that attempt to raspberry, for that moment in time, was Cody's personal message to me saying, "I'm IN here, mom.  I promise."  It was my little signal that Cody's still Cody - not just a ragdoll imposter.

I love the Dr here - he specializes in complex kids with H1N1.  He 'gets' it and has included me in every conversation he has with the nurses, Dr's, etc.  I felt priveliged that he brought Don and I into his team meeting with Cody's team - there Don and I stood in our face masks with about 10 other Dr.s who were all tending to Cody's case.  That is a 'family' approach which is what Children's strives for. 

So the greatest concern at this point is his lack of energy.  The Dr. said his battery is just literally dead.  Meaning....he has no energy.  Period.  And with mito kids, that's the great scary issue.  With no energy, how do you fight such an aggressive virus?  So we wait...and watch....and wait for that battery to get re-charged.  Some things are going our way: fever depletes the battery and dehydration depletes the battery.  We are gaining ground in both those areas.  Coughing and trouble breathing depletes the battery - not looking great there.  Seizures *really* deplete the battery so that is a big risk factor for him...we have to pray for those seizures to stay away.  Low blood pressure is a sign of a depleted battery.

So that's the big picture.  We are just now starting his regular formula so hopefully that will bolster him.  Up til now he's just gotten glucose/saline drip.  We're going to start some CoQ10 today too which is the mito powerhouse.  Hopefully that will help. 

Big scary.  It is always so profound, poignant, and heavy being at Children's.  Not just for our lot....but even sitting here in the family resource room...there are parents all over on phones calling to arrange child care, bills getting paid, talking to their other kids on the phone, putting out the fires in their lives that occur when you are suddenly whisked into the hospital.  So many heroes around me - honorable company.  There have been wry one-liners abounding.  I just looked up from my computer to the sea of parents sucking down coffee and freaking out....and I said sarcastically, 'GOOD TIMES!'....and we all had a great chuckle.  Sometimes you need that tension breaker.  You know it's crazy when the parent on the computer across from you says, 'how do you spell ventilator?' as they email their families.  Another lady is just now telling someone on the other end of the phone, 'I'm surprised he made it through the night.'  So much pain. 

Yet in the midst of it all, I feel God ministering to our little family.  The support we feel has been overwhelming.  God's fingerprints are everywhere.  We trust Him with Cody - and we beg to receive Cody back into our arms soon - as the little rasberry boy we know and fiercely love.

More later,

Shawna