WE ARE FINALLY HOME!  After 1 day in the E.R. and 3 days hospitalized, Cody is home!  And our dear little man of steel has blown everyone in the medical community away.  We LOVED LOVED LOVED our Dr!  What a blessing it is to feel you are truly in good hands.  The Dr. told us today that when Cody was admitted, he took a look through his file, and thought "this is going to be at least a week and a half in the hospital...with a very risky first few days...."  He said he predicted (then) that Cody would have a dire time of it given all of his seizures, mito disease, and potential for complications.  But today he said to his shock, Cody has dodged every bullet that came his way.  His fever broke, he never developed respiratory complications (a miracle!), his blood pressure stabalized, and best of all, his seizures didn't wreak havoc and create a giant medical emergency which was all of our greatest fears.

And today, after all these days in the hospital, Cody woke up even more stable.  His cough had decreased to just a few big coughs a day.  His fever stayed down.  His blood pressure stayed low.  Everything kind of evened out.  He was still very lethargic and didn't spend much time awake or moving.  But at least he seemed to be out of the woods in terms of vital signs.  Now it seemed to just be a matter of re-gaining energy.  Dr. Danielson was very sober about what to expect the next couple of weeks.  He said the seizures will most likely come back (we are now over 48 hours without seeing one), and that Cody probably won't lift his head off the pillow for up to 2 weeks.  He said that is okay, and that is what he predicted it would take for him to re-charge that battery.  He reminded us what his little body had been through, and that with mito disease, it can take weeks to be able just to walk again.

Then he asked us how we felt about going home since Cody had stabilized.  I said, 'let's go!'  He gave us his pager number and wants me to check in with him every day for the first 3 days...then as needed for 2 weeks.  So we started packing, and the nurses took off that dreadful I.V. that was taped to a board on his arm.  Cody was still lifeless - and sat in the car on the way home in a stupor.  We were SO glad to be going home - but filled with trepidation about what the coming days will bring.  It was made clear that he was not out of the woods and that the coming couple of weeks would tell the full story.  Everything depends on how his seizures do....if the respiratory issues flare....and mostly if he can re-gain the energy that is so sapped. 

We pulled up to the house and in his car seat, Cody leaned forward and started signing 'all done.'  This was the first sign of life in many days!  He was saying 'I'm all done with this car ride!'  So I said, 'Cody!  We are all done!  Let's go inside!'  I carried him inside, and no kidding, he scrambled to the floor and walked himself into the living room where he RAN full steam from toy to toy - giggling - laughing - running to us and jumping in our laps - hurrying down the halls to check out each room.  It was like a Pheonix had risen from the ashes!  He CAME TO LIFE and went like the energizer bunny ALL NIGHT!  He finally conked out at 8pm after exploring the whole house, eating a robust dinner, finally having a bowel movement after 5 days (another relief!), and giving us giggles and hugs aplenty.  It was like a dream.  The little boy I thought I might lose had returned and then some!

Don and I just sat there all night with our jaws dropped.  We kept saying, 'WHAT IS GOING ON!  One hour ago he was a lifeless blob in a hospital room hooked up to machines.  Now he is bubbling over with energy!  It's a miracle!' 

I have lots of opinions on this.  I think 2 days of no seizures can't be underestimated with regard to mood, energy, and ability to get crackin' again.  His brain has had 20+ seizures every single day for 4 years now - what a reprieve to not have ONE in two whole days!  I also know God has intervened in a big way and He gest the real credit for Cody's miraculous comeback.  We have a ways to go - we need to give him time to let this play out because he has been *really* sick.  But for now we are just taking this and loving it and praying for more of the same. 

He's contagious until he's through with his course of Tamiflu which will be this Saturday so we need to lay low and not take him anywhere public.  And we desperately hope that Casey, Don or I don't get it.  But for now, for tonight, we are just grateful and nothing more.  We borrow no trouble from tomorrow, we are just glad he's with us, he's smiling, and we're home!

With love,

Shawna