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    So here's the hospital stay post.  Many of you followed my cryptic messages on Facebook, but everyone may have not gotten the whole story.  Anyhow...

Day 1:  Day of surgery.  Spencer was super crabby that morning as the night before he didn't want to sleep.  We stayed in a hotel room which tripped him out.  He probably slept two or three hours.  We also found out that the operating room Spencer was going in didn't have an induction room.  For those who aren't frequent fliers in the surgical department, basically an induction room is where they put gas on the kid's face and knock them out, then take them into the actual operating room.  I've put my foot down when this has happened before.  Spencer knows the system and would flip the fuck out if we handed him to a surgeon and walked away.  With Spencer's complex airway history, many docs feel uncomfortable putting him under in the induction room across the hall.  This time we thought to ask about the induction room well before hand, so we agreed since he was pretty tired anyhow, that we would try some Versed with him to see if we could get him to sleep before we passed him off.  Spencer was high as a kite when we passed him off to the surgeons, and didn't even realize we had left.
     Surgery went fairly smooth.  We were told it would take four and a half hours, which would be Spencer's longest surgery to date which made us incredibly nervous.  Dr. Mangano was done in about two hours.  He said he the spinal cord presented itself as tethered.  He also informed us we'd be hospitalized another day, something we weren't expecting, because he counts surgery day as day zero (who does that??!!!).
    Spencer was sent up to the ICU after surgery, which is typical.  We were also informed we would likely be there for the entire stay, another thing we weren't expecting.  That night Spencer had one hell of a pain episode.  He tried to get up several times and went into tachycardia a few times.  Jimmy and I took turns holding him down, while the nurse kept frantically trying to get the doctors to prescribe something to ease his pain.  I guess the docs didn't believe all of us that he could be trashing around so much even though he had enough pain medicine in him to take an adult down.  I finally got fed up after 3 hours and told Jimmy to tell her to get the pain management doc and the resident in the room.  After that his pain was better managed.  At some point, Spencer stopped breathing.  I was watching the monitor and saw his respiratory rate go to 0 and his oxygen level quickly fall.  The nurse was running in as Jimmy was opening the door to get her.  In the meantime, I was shaking Spencer to get him to wake up.  The nurse put the O2 mask over his face and he quickly picked his stats back up.
      I have to mention, even though we told everyone to avoid it, Spencer ended up with an IV in his damned clubbed foot.  I threw a fit, but realized since he is such a hard stick we'd leave it for the night and asked for an ortho consult in the morning.

Day 2:  Pain was still an issue every three hours or so.  We were still struggling to find a good mix of meds that wouldn't kill Spencer.  Fentanyl was like water to him.  The resident ordered a metabolic panel, and discovered that Spencer has a very high metabolism which is likely why the meds go right through him.  He stopped breathing again, long enough for the nurse to say code blue but not have to page it, thankfully.   I felt so helpless when he cried because I couldn't pick him up since he had to lie flat. 

Day 3:  More of the same.  He slept a lot that day if I remember correctly.  Pain was being better managed and we only had one significant episode of pain with tachycardia.  At some point on this day I decided his gtube was super loose and tried to check the water level in the balloon. Couldn't get any water in or out of the valve.  Told them

Day 4:  Mangano decided we could get him out of bed, finally.  I got to snuggle with him.  Spencer was still pretty sore, but was wanting to be held a lot.  His Uncle Jerry came by and we went down to the gift shop to get him a giant Elmo balloon, which he was afraid of.  In Spencer's defense, it was pretty creepy. 

Day 5:  Got transferred out of ICU and onto the Neurology floor.  Spencer slept a lot but played a bit too.  He was sitting up a lot that day.

Day 6:  Was told pretty early that we were likely going home.  We were packed and ready to go by 1.  Didn't see Mangano until