Hi all, I just stole away for a minute and wanted to update this simply to ask for more prayer for Cody.  We spent yesterday at Children's
E.R. and today we came back to get admitted after the test results came in and showed he has swine flu.  We are quarantined in a room - in what they call 'complete isolation.'  His reaction to the flu has been labeled 'dire' - and he's being watched by specialists in kids who are medically fragile who come in with H1N1.  So far, he's having trouble beating a 103.5 fever.  It goes down for a tiny while, then spikes back up.  He is on fire most of the day - even holding him in my lap I can feel his legs sweltering through his pants.  He's totally lethargic, won't even open his eyes.  His blood pressure has been elevated, he's had labored breathing, vomiting, coughing, dehydration.  It all happend SO fast.  Yesterday was the first sign of anything - he woke up with a cough.  Then overnight it escalated in a crazy way.  It has hit him like a freight train.  He's on Tamiflu which is all they can do other than keep him hydrated and keep the Motrin up.  But the Motrin really only takes the fever down to 101.5 at the lowest, and only for about 15 minutes before it shoots back up.  Don and I have been cleaning up vomit for 2 days straight - poor little Cody. 

It's very sci-fi.  Our room is 'negative air pressured' and there are signs all over saying 'CAUTION!  ISOLATION!  QUARANTINE!'  Every dr. or nurse who comes in has full head to toe wrapping on.  I feel like we have the plague.  But everyone here is being very thoughtful and doing all they can.  Children's is a great place and I am advocating my hiney off.

It's complicated to explain, but with mitochondrial disease, the body doesn't have enough energy to support itself when a child is healthy.  So when an illness hits (esp. one as aggressive as H1N1) a child like Cody just can't rebound.  The illness takes him to such a level of depletion that he can't recover.  He literally has NO energy.  He is lifeless, glassy eyed, unresponsive.  This has been my great fear - this flu hitting Cody.  As our Neurologist once told us, these mito children don't die of organ failure or seizures.  They die from things like the flu, which makes them spiral down further and further til they simply can't recover.  I know that may sound dramatic but it's what we live with.  I'm trying to stay calm and focused - and I have great faith that God is in this every step of the way with us.  Still, it is so scary.

Casey is at home with a dear friend and caregiver for now - not sure what the next few days will look like.  They are waiting for him stabilize before they can even really comment.  The fever really needs to get under control - it's not good to hover at 103-104 for this long.  This flu often manifests in the lungs with big coughing so we are praying against that.  He is already coughing, but no sign of fluid in his lungs yet. 

He had a 3 minute seizure today and tons of littler ones.  We are in complete isolation with no visitors allowed.  So crazy.  Don is running home tonight to see Casey and get fresh clothes, toiletries, etc.  Please also pray that Don, myself and Casey don't get this.

I must run, I'll update again when anything changes.   Love, Shawna