Now What?

Reflecting today again ... God has saved this baby's life! I'll go into details and specifics and statistics later time but it seems like the baby is out of the woods. We have a long way to go back to his "normal" plus a lot of unfinished questions ... like long term kidney/liver/gall bladder/bone marrow issues? And how to avoid this in the future? and Isn't there another way for him to eat that's not so dangerous?


But for tonight, I sit and watch the little miracle sleep. God is certainly to be praised. There are numerous Doctors who made the right calls at the right time. All adding up to the right decisions. There are hero blood/plasma donors who gave the gift of life. There have been encouraging folks with the word fitly spoken at the right time. All are miracles in our life. 

And while this hospital stay is far from over ... I now believe that he will, indeed, come home with me at the end of this stay. (There was doubt for a time... and I know some of you might say, "I never doubted" ... but trust me, he's ONLY here because God wasn't ready for him yet.)

And the pain... oh the pain he has endured.
 
And my heart ... my body, mind and spirit are still traumatized by the decisions I've had to make over the past few weeks.  Some of the words I've heard.  Some of the details (still too painful and raw to put out there). 
 
But here's one I'm finally able to write for the first time.  Remember the day last Tuesday when he was rushed by "rapid response" (a step below code blue) to the ICU?  Remember how he was frothing from the mouth, was basically unconscious and yet still screaming?  Remember how his blood pressure bottomed out? 
 
Well, the blood pressure basically went to Zero.  And the term they used was, "Fluid Resuscitate".   Isn't that a crazy, scary term?  I heard it and my knees buckled under me as they whisked him away from me to ICU.  It was at that exact moment in time that I got a text from a friend that said, "I'm on my knees" and I texted back, "My knees just buckled".  They pumped him so full of fluid to get his body going again.  (Thus the extra 7 pounds and the eventual need for the chest tube.)  They were afraid to sedate him in any way because it would lower the blood pressure even further.  They could only give certain pain meds for the same reason. 
 
He was hanging on by a thread.  And the thousands of prayers going up for him around the world. 
 
And God heard every one. 
 
And as he sat in his wheel chair today, playing, basically back to himself ... I wonder what it was all about.  What the heck?  Why did he have to go through this?  Are there lessons to be learned?  (If so, hope I learned them!)  
 
Mostly I think God is supposed to get glory out of this somehow.  And I'm not sure how to do that well enough.  He deserves the biggest Praise Party there ever was.  For He alone restored Manny to health (through various means).  I wonder if I'm telling the story well.  I'm wondering if He is proud of the way we are going through this?  I wonder if I'm missing the point entirely. 
 
And I wonder "what's next?"  I'm sure that sounds like a huge lack of faith.  But from my perspective, it's learned conditioning.  Afterall, do you know how many days we've been in the hospital versus home since September??  I'll let you guys all guess before I say the answer.  (A lot).  Every time we go home, we have the expectation that THIS time will be different.  THIS time they fixed the problem. 
 
This last time was going so well that we actually bought tickets for out of state for Winter break.  (Refundable, thankfully.)  We had this "Life is going well so let's go live it" philosophy.  And this particular episode has me a little on edge.  I'm not sure how to settle back into "normal" life again.  I think part of me will always be looking over my shoulder, waiting for the other shoe to fall.  Afterall, he still has an underlying terminal condition that we know about... and a progressive condition that is still unnamed. 
 
Eating via the veins can do this again.  We can end up right back here. 
Eating via his tube can end up with multiple complications (heart attack, respiratory failure, pneumonia)
So I'm left with the question of:  NOW WHAT?? 
 
I'm sure I'll eventually settle back in and life will pick up its crazy pace and I won't have such time for reflection as I do here.  But THIS is my biggest concern right now.  I've never been the kind of person to life half-heartedly and I'm not about to start now.  But I can say, I might take the first few steps out of the block a little more gingerly than I normally do. 
 
What's my point of this rambling?  I'm not sure where we go from here.  All I know is I want to tell Manny's story well.  I want there to be an amazing story to tell.  I don't want to miss one second of this journey. 
 
And I want God to be proud of us both. 
 
That's what I want.