Friday, January 10, 2014

Revelation. . .

* I was prepared to post this a couple of days ago, since then, we've had a nice meeting with many of the key players.  The battle is harder, the weapons are fewer, the warrior is frailer.  However, the battle continues and we will fight. Sergio has shown no interest in giving up.  He is happy and loving life while healthy and when he's sick, we'll work hard to get him through.  In the mean time, we are looking at more options in how to assess his GI tract to trace where there may be areas of concern or remediation.  We will re-assess his vascular system and see if there are other places to put new lines as they become infected.  We will analyze his previous antibiotic experience and look for other options.  So, I had another day of revelations.  Revelations of hope to counter the ones of fear.  And so the story continues.  


Today was a revelation kinda day.  We've all had them, maybe you realize a relationship needs to end, a job needs to change or your hair needs a new color.  Whatever it is, we all have them.  Today was a revelation day for me.  Sadly, it was a revelation I've been banking wouldn't come anytime soon. 

Today I heard the words that stirred the revelation to a new high.  Gram pos. cocci and gram neg. anaerobic.  I've heard those words hundred of times between all of my kids.  What makes it different, is that this time, these two bacteria are failing to respond to the antibiotics we've been steadily pumping into my youngest son.  This time, they are growing together and are refusing to remit to what is suppose to be their cryptonite.   My sweet boy, Sergio, has no idea there is a war of all wars going on inside of his little body, right at this very moment.  He is busy playing at school.  He is busy being bad, being good, being funny, being mischievous, being Sergio.  He is living and so is the bacteria. . . the question now, is who will win.

We are in for the fight, but we are fighting against an enemy we do not understand, nor do we have the ability to stop it from coming at us again, and again and again.  His gut stopped working for all beneficial purposes, but has now turned on my sweet baby and poisons him monthly.  In turn, infecting his life line to nutrition and hydration, his central line.  Without a central line, there is no Sergio.  With the central line, the bacteria have a party central to hang out and make him incredibly sick.  There is no win, win here.

 Sitting in the car I found myself having some very strange thoughts attached to this revelation.  I realized my hair needs to be colored, I don't want to make big decisions with gray hairs showing.  I realized my basement needs to be cleaned, I don't want to make big decisions with a messy house.  I realized I need to get some good freezer meals made so there are things to eat. . . yeah, that one is always a need regardless of the days revelation's.   Is this what other mothers thought when they were faced with the realization that life is changing dramatically for their child? 
So we march on, and fight as hard as we can while maintaining as much neutrality and home bound time as physically and medically possible.