I just got home from the ER at 10pm.  Don's still there with Cody finishing up an IV drip.  I had to come home and pick up Casey and put him to bed.  So after 5 hours in the E.R. they "don't know what's wrong with Cody."  They just kept saying mitochondrial disease is very very rare and it's often the case that you don't know what creates these scenarios.  He got a complete blood work up done and it was all normal.  His heart and breathing were normal.  They did an IV drip as well as carnitine which boosts the mitochondria.  So we did all we could - we hydrated him, tested all his functions and blood.  The rest is up to Cody.  It's weird because I know it's not the flu - he has no symptoms.  He did throw up twice over the last 4 days but that's not super atypical for him.  So what we know is he's had 2 vomiting spells in 4 days, and other than that, he's been completely weak - had no muscle capacity - is lethargic - won't eat or drink.  The Dr's said it's mitochondrial muscle weakness brought on by who knows what.  It's likely the mitochondria just aren't working great, which can exacerbate his gastro issues and cause vomiting.  So rather than a cold or flu, it's mitochondrial disease related.  Sometimes, apparently, the mitochondria just can't support the body and they spiral down like this.  Quite crazy.  So we have to (all the more) regulate his energy expenditures - give him lots of breaks and down time - try to get him lots of sleep (ha!) - and really boost him nutritionally and with supplements.  That's really all we can do - no magic bullets - just simply do these basic things to try to support his energy as much as possible.

The next few days will be telling and I"ll be in close touch with the mito nurse at Children's - and Dr. Saneto no doubt.  If he continues to spiral, they'll probably admit him to the hospital and use a G-tube to get food down him so he doesn't spiral too far down nutritionally. 

He seems (maybe?) a little perkier since getting the i.v.  He ate a few bites of nut butter and bread and is walking around at least.  I'll keep you posted.  Thank you for your prayers and emails of support!  This ride never ends!

with love,

shawna