The Best and The Worst

I apologize for writing this update so late, but I've been trying to think about the words I need to type in order to get this done. The ENT came in and we discussed the fact that Kai had de-saturated as low as 72 the previous night. Here's our options: First of all, Kai needs to have TWO good nights of steady high saturation levels (90's) in order to be discharged to go home without further problems. This is worrisome to the ENT. We decided to do the following:

Plan A - The Best Scenario) If he sleeps for two nights, no problems with dips in saturation, he will be discharged on Friday to go home with a monitor that will track his levels. If we notice his levels are lower than what should be, he can be either put on a CPAP machine (which we tried in the ICU in Ft. Myers and he HATED!) for approximately two months to see if is levels have normalized or we can take him to Orlando to see his cleft surgeon and discuss the alternatives there.

Plan B - The Worst Scenario) If he does horrible for the next two nights (Jesus...please don't let this be the option!), we will then go from this hospital directly (probably another airlift since they don't want him traveling by car/ambulance in respiratory distress) to Arnold Palmer Hospital in Orlando directly, without going home. There he will be seen by his surgeon and a new team of ENTs.

Plan C - God's Miracle) That he have two great nights and go home without every having any apnea issues again!

Neither option A nor B sounded to me like it was a "Everything is great. You're discharged. Have a nice life" kind of answer. So, I'll have to keep believing that my God is bigger than any predictions any human man can make. I'm praying for Plan C.

I think I've covered every emotion possible today, from watching him sitting on the bed playing with playdough and my heart breaking to anger at why this is even happening. I have felt guilt because this may have all started with his catching bronchitis. Should I have been more vigilant in making sure he didn't catch anything? AJ was sick prior to him. Should I have separated them? There are so many should've, would've, could've that I'd go nuts thinking about them.

It's now midnight and Kai had fallen asleep finally out of pure exhaustion around 10:15. I kept vigil over the monitor and prayed with each time the numbers changed. They all remained in the 90's (PRAISE GOD!!!!) but then they came to wake him to give him meds through his IV and that was it. Again, all hell broke loose.

He had been complaining that his IV (his 3rd one here) was hurting. Sure enough, it was leaking. They called the IV team and it took them three tries to get it in. Poor baby screamed and looked at me with those big, beautiful eyes waiting for me to stop them. It kills me. It really rips my heart open to see him waiting for me to protect him, and I can't. I tried reasoning with him and then his little Chinese temper (the one that I know will get him very far in life) flared up and he yelled, "I no talk to you!" I continued to stroke his back as we both cried. My poor baby.

Oh, Kai-Kai. Although I tell you, I wish you really knew that I would trade places with you in a nano-second if I could little man. Every needle that goes into your tender skin, I feel in the deepest parts of my heart. I love you so very much and would do anything to take this away from you. You are such a brave little guy. Your Mama will be laying right by your side again tonight, praying in your ear that God's mercy rain upon you and this nightmare finally end. May you have sweet dreams, sweetie. Sweet dreams without having to gasp for air. I LOVE YOU FOREVER AND EVER AND EVER!