The major Episode.... one of the scariest day of my life!

I still remember, the phone rang, it was the morning of May 19th @ 7.46 am.  The caller id states NICU... I knew something isn't right.  Dr Powell right away said, Laynson has been a very, very bad boy.  He stopped breathing for 1-2 minutes, had a seizure.  His CO2 level went up to 199 (normal is 35-45), his Ammonia level was 212 (Normal is 40s).  I still remember, she told me that if you and I were to have 199 for a while, we would end up in a coma.  They had to intubate him and now he's fine. 

I rushed to the hospital as fast as I can.  I was crying like crazy because I don't know if he were to make it or not.  When we got there, you were not moving.  I thought you were in a coma.  The nurse assured me that you are still moving, just lethargic.  I was afraid that you were in coma :(

 

I had a terrible headache because I was pretty much crying for hours.  The nurse and Dr wanted to drag me out, kept asking me to go home but I wouldn't leave you.  I wanted to make sure that I am there for you.  Then, at about noon, Dr Powell came stating that your CO2 level came back down to the 50s, that is very, very good.  Though, what caused all these drama and episodes?  We are not sure.  I don't know.  She likes to use a word on you, I don't recall.  It's basically stating that, you are a mystery, she just cannot solve it.  

All the test always comes back normal, comes back good... so, what's wrong with you.  Initially, she said that she thinks you have the CCHS, Ondine's curse but then, you don't require the ventilator all the time, most time, you are on room air, with 1 liter flow, so, she said that if you have Ondine's curse, you would need your ventilator all the time.  Which is weird...

6 hours later... you finally look a little more alert... finally, I am RELIEF!!!!  I look at you and you were finally looking back at me.

And then, a couple more hours later... you were looking even better... PHEW!!!

I still remember, I went back home to take a shower that night and I just broke down and cried so badly.  I was so scared of losing you... I told your dada that I would not be able to continue living if I were to lose you.  Please.... stay strong baby boy!