1:45 AM - yeah AM - this post is going to ramble a bit (sorry!). Jaymun is slowly improving on all fronts. He is still intubated - they did breathing tests and he managed on his own. He is sedated otherwise it would be too uncomfortable.
His CMV numbers are still holding steady - we are glad they are not rising although it would be nice to see them go down to zero. His liver stats are making small improvements, although his liver still is quite large.
I can't wait to get the breathing tube out, him "un-sedated" or whatever they call that, the drain out of his belly, his liver back to normal, him eating again, grinning and laughing, etc. I want to toss him up in the air, and tickle him, and snuggle, and hold him upside down, and blow raspberries against his cheek. You know, all I have to do is look at the little guy and he will usually start chuckling. We have some secrets already, him and I. Do not ask me what they are, but I anticipate Jaymun and I will discover them together. The father / son kind of secrets. There are a lot of things I need to teach him. Starting with how to properly burp and fart - of course, ahem, NOT around ladies (grin).
Right now he seems pretty fragile. People ask every day - how he is. The changes have been so incremental - his skin color, the amount he pees, the amount of ammonia in his blood, his CO2 blood gas level, his bilirubin level, etc. It is strange how your point of reference changes. One day you are worried about an upset stomach - and a coupla days later you are happy that he is comfortably sedated rather than squirming in pain.
As a parent this is almost like an alternate universe - a weird state of limbo - an unnatural place you are uncertain how you arrived at. Other parents here share the same feeling. Like you were cheated out of something huge. Normally with a new baby you are filled with awe and stirring promise of life to come. But with horrible news like cancer, everything is clouded. So then you adjust. You find happiness and hope within the scope of your circumstance. Playing with your son in the hospital room...
But we have had to adjust, and adjust... The scope keeps narrowing.
Well, I've had just about enough of that. And I'm not saying that brashly. I feel like God would have us shake off the temptation to feel sorry for ourselves. Tonight I met some beautiful people who just lost their child. They are at peace with this deep sorrow. They had to watch life support wane for their beloved child who they now anticipate being supported in the new life with Jesus. And then I go look at my son. He looks strong. His chest is moving up and down. His heart is beating. And I feel very blessed.
So we lost a little time together. A few weeks. A few months of stress. New Years Day 2007 is around the corner. There could be worse ways to end out 2006 than spending alot of time praying.
By the end of next year this may all seem like a dream of the past. A story in the annals of the providence of the Lord.
For now, if God gives me the job to live in this narrow perspective, praying for my little helpless boy to breathe and pee, then that's what I'm gonna do.
Thank you for standing by me in this moment...