Facts and Feelings

2pm ... Infectious Diseases doc just left.  I.am.in.shock.  He is greatly concerned.  He wants to pull this central line ASAP.  (Is upset it wasn't already done.) 

Once the line is pulled, they will see if his labs immediately improve and if so, that's good news.  If not, there's already another colony set up somewhere and then we have to go hunting. 

There are signs that this is already in his bone marrow though.  (Clearly, NOT good news.) 

Once the infection is clear for at least a week, then they might put another line in.  But he has to be infection free for 14 days before they will let him out of here.  SERIOUSLY?? 

My brain is spinning and I cannot get my head around this. 

Meanwhile, his pain level is increasing.  He's refusing to be touched.  He doesn't want to sit, only lay down.  He doesn't even want to lay on his side.  There's only one semi-comfortable position for him.  He can't stop screaming. 

His stomach looked a bit distended so they ordered a KUB xray.  They're going to have to do another one as that one showed "something" but it was inconclusive. 

Then tonight, his weight is up 1 Kilo (2 pounds) in 2 days.  (VERY concerning). 

These are all signs that the infection is kicking his butt. 

The only "good" news of the day is that the results of the blood culture are in.  He has Candida Albicans and Staphlococcus Epidermis.  These are both very common and found in/on most people.  But for some reason, it just got ahead of him.  And these both have treatments.  (The bad news is that he has already been on those treatments and it's not working so far.)

So those are the facts ... what about feelings? 

Can you handle the feelings?  If not, stop reading here.  (NOT looking for people to tell me I'm wrong or I shouldn't feel this way... just sharing my feelings.)

18 months ago I was sitting in a room just down the hall from where I am now and we were being given the news that he wasn't going to live to his first birthday.  We begged and pleaded with God and somehow, God heard our prayers and let him live. 

I knew then that if/when God takes Manny, that he will be better off.  He will stop suffering.  He will be able to run, and jump, and dance and eat.  So when I begged God to let him stay with us, I was like "Unless he's going to suffer." 

That was always my line in the sand. 
I want him here with me, unless he is going to suffer. 

And guess what?  He.is.suffering. 
A lot.

So there's this huge part of me that feels guilty and selfish.  (Yes, I know I can look at it as all the love and support we've given him, all the wonderful experiences he's had and the love of the family.  I get that ... I USUALLY live in that moment.) 

But right now, as I sit and hold Manny and can't comfort him
As I watch him in severe pain
As I listen to him scream for hours and hours on end
As he is slipping further and further away from us
As I beg God to help him
it's hard not to feel responsible for this. 

And I feel completely selfish. 

The Mama in me wants what's best for him.  I still believe to the core of my being that his life is still worth living.  That he is supposed to continue to bring more joy to the world.  That it's worth fighting for him to continue to stay with us. 

But I also want him out of pain. 

And the question haunting me all day is:  If I can't have both, which do I choose? 
And I'm in tears because I know the answer.