Thursday, December 19, 2013

This stupid infection

I know that my title shouldn't really be as negative as I have it.  But calling this infection stupid is the nicest thing I can do at this point.  We have made really good progress, but after talking to all of the teams today, we still have some hurdles.  Look at this kid below.  This was medicinally paralyzed, sedated, breathing tube, abdomen open, a million lines everywhere, the whole works. 
We haven't had to use this machine since a week ago!  This was the CRRT (hemo dialysis) machine.  Wonderful news! 
We've also significantly cut down on the number of IV meds and lines that Blake has.  This was the biggest I've ever seen his IV pole, even after transplant. 
-The breathing tube came out on Monday
-His arterial line came out on Tuesday
-His dialysis catheter came out on Tuesday
-Not sedated anymore and weaning him off of his sedation/relaxation/pain meds
-He smiled a big smile at me and called me, "mom" for the first time since all this started. :)
-His kidney numbers aren't where they need to be, but they are headed in the right direction.  He is peeing like a champ!
Bad news:  I'm going to try and explain to you what is going on with this stupid infection the best I can.  I may confuse you more, but I will try my best.  Ok, so Blake's white blood cell count and other infectious numbers are moving in the right direction.  However, they have taken blood cultures and two of them have come back positive with the same stupid infection (gram rod negative) that caused him to be septic.  It generally takes about 72 hours (unless it's a really aggressive bad infection) for a culture to grow something.  So, Sunday's did and also the one on Monday we just learned today grew something.
They took numerous cultures on Sunday and only the one grew something, which made me think the infection was just on that one line.  The doctor was quick to point out that that pretty much meant nothing.  Infection does like to harbor around foreign objects in your body and plastic, but she pretty much said it didn't necessarily mean anything.  

The culture came from his PICC line, so they are taking that out.  They will put in just a regular peripheral IV and continue to take blood cultures and see what happens.  They think that he is going to continue to grow stuff on his cultures. 

I talked to the PICU doctor about the timelines of things.  After Saturday's scare that culture obviously grew the infection.  Sunday's did too.  BUT, everything stayed negative UNTIL they took him back to the OR to close his belly.  That Thursday of the belly close his cultures started to come back positive again.  What exactly does this mean?!  That's exactly what I asked the doctor.
She firmly believes that there is still infection harboring somewhere in his abdomen and when they went in for the wash out and belly closure that stirred everything up again.   As I type this, they are getting ready to put in the regular peripheral IV.  Once placed, the PICC line comes out.  We'll wait and see.

It just feels like everybody believes the infection is in his abdomen. If that's the case, it sounds like there are three options: 1. Figure out a way to treat it with stronger/more/different antibiotics 2. Have interventional radiology get rid of it if possible and 3.  Open up his abdomen.  Again.  I pray like crazy that we don't have to do this again.  It pains me to even type this out.  The worry is that as soon as Blake goes OFF his antibiotics this stupid infection will rear it's ugly head again. :(

I'll be honest.  This morning was rough, talking to the teams.  I wanted to just cry.  I was texting Aaron my frustrations.  I just wanted to yell at the top of my lungs that my Blakers deserves a freakin' break already.  Pretty much playing the poor me thing in my head.  And then it happened...

PT came in and we put Blake in the chair for awhile.  He is EXTREMELY weak.  We were watching home videos on the iPad and it perked him up a little.  Then Blake, my hater of lint child (weird I know) saw a white piece of lint on his black shirt, got this funny look on his face, pointed at it and said, "Mom! Mom!" Those are the first words he's spoken in 13 days.  At THAT moment, I got my head back in a better spot.  I saw my Blakers and I just kept thinking that we need to do whatever it takes to get him back to normal.  Even if it means a longer hospital stay.  Even if it means another procedure.  I miss that little boy like crazy!!

So, I'll keep you posted.  Like I said, I probably confused you all more, so ask questions if you need to.  Please pray to rid Blake's body of this infection once and for all!!!



Rachel Ballenger said...

I pray for you both everyday. On days where you feel like theres no end in sight and your tired of being so strong just remember your an amazing mommy because Blake couldnt be as strong as he is without you by his side. Jaxson had this blood infection that put him on the ventilator and hospitalized for 39 days and even though it took so long for him to get better HE DID GET BETTER. You and your family are tough and it takes alot of love to hold it together! Keep your head up. Youll continue to be in my thoughts and prayers

Rachel (Jaxsons mommy)

Marcia said...

We continue to pray for Blake....and for his Mommy and Daddy! Love and prayers....Marcia