Jan 26, 2012

And we wait

So can you PLEASE tell me ... why in the world did the night nurse feel the need to wake me up to tell me the meds were given?  I don't mean she was loud (which she was).  I mean, she walked over to my side of the bed, grabbed my arm (to which I would startle) and say, "I gave him his X med".  In my sleepy stooper, I didn't even THINK she would do it for each of his middle of the night meds and problems with his pump. 


Must work on new strategy for tonight.

Other than that, it was a fairly uneventful night.  Manny's fever went away. 

This morning, labs are starting to come in.  There's no indication of anything horrible ... but there wasn't last time initially either.  So nothing helpful yet. 

There is an interesting thing going on ... Manny's PICC is "acting up".  It flushes fine.  And the fluids are running just fine through it (mostly).  But periodically, there's an error where nothing will go through.  Makes me think that the PICC is slightly out of place or something.  And then sure enough, the report from the chest xray taken last night just arrived and confirmed what I suspected.  It's out of place.  Not horribly, but will need to be adjusted likely today.  (That's not a huge deal, not much more than a dressing change, which he already does once a week.  He doesn't like it but it's not super painful or something.) 

And we wait. 

7pm ... the day was fairly uneventful.  Infectious Diseases doc came by and was still distressed that there was no new news on the blood culture done on Monday evening.  So after he left, I called my contact directly.  He said he'd call me the moment there was news.  And he did ... about 2 hours later.  It came back with "Gram positive bacillus".  So you know how yesterday I said it was like asking what you ate and you responded with "food"?  Well this is like saying, "Warm food" ... still not very helpful. 

In almost all cases where Bascillus is found, it is considered just a contaminant.  They almost always rule it out as such immediately.  UNLESS a child has a central line.  Throw in that he has a low grade fever intermittently and pain at the PICC site and they have to do the complete work up.  One doc wants to pull the line NOW.  The other says not to.  We're in some gray area, clearly.  Both agreed, however, to start immediate, aggressive treatment just in case. 

I understand that your past reactions to being septic determine your next time.  And as we all know, he didn't do very well.  It's one of the reasons they ask things like if you've ever had a blood transfusion or on a vent or been resusiciated, etc.  (All of which is YES.)  So they have to treat this as if it is real until there is verification of a negative blood culture.

Doc came in and I pressed him until he said basically it's 50/50 if this is a real infection (i.e. similar to last time) or a "nothing" thing. 

So the scenarios ... if this comes back positive, we should know by Friday afternoon ... that's how quicky the other one came back positive.  If we pass that time, we aren't exactly in the clear but we can start to breathe a sigh of relief.  Tomorrow is a key time for us. 

Now, the chest xray was done to see if his PICC was in place.  It is not.  It's not horribly out of place.  It's still usable.  But it's short of where it should be.  It also has a kink in the arm portion of it.  This is likely his source of intermittent pain he's been complaining about. 

So the IV team came to see if she could adjust it.  She can't push it back in further into place, but she could adjust the kink.  I'm so glad she did because when we took off the bandages (some are clear and some you can't see through), there was a LOT of skin rash ... almost the entire area had bright red raised bumps.  And there was some skin breakdown under the statlock.  So she cleaned it, let it air, used a new type of dressing and moved the location of the statlock.  I think it will help BUT there's still a lot of rash in the area. 

Doc and I have decided a few things in our plan of care for Manny.  1)  We will not be doing a broviac any time soon.  Because IF this is seemingly negative, we treat it as such and put in this more permanent line and it turns out to be something afterall, we are right back where we started in early December and we ALL want to avoid that!   2)  I do NOT want to go home with this PICC line in.  Due to it being slightly out of place and the huge amount of rash/skin breakdown in the area, we would be playing with fire to do that.  3) Therefore, we know we will be putting in a new PICC. 

What we DON'T know is when that will be.  But if nothing grows in his latest culture by say Saturday afternoon, that will be our cue that this was most likely a fluke and it's "nothing".  We can then pull the line and put in a new one.  They don't do PICCs on the weekend usually so Monday is likely our day. 

And all this changes if something grows on that culture. 

Holding our breath.

How are we holding up?  As well as can be expected.  This part of our lives have become "routine".  We have procedures in place for everything to what to pack, what groceries to have at home, toys/movies for Manny, who does what role, back up meal providers, etc etc.  We have this all too practiced.  Makes for a smooth transition in and out of our hospital life and real life.

11pm, about to head to bed.  It's the same nurse from last night so I guess I'm supposed to learn to deal directly with people.  Not too passive, not to aggressive, but "just right" (Like Baby Bear) and be appropriately assertive.  So I say to her basically, thanks for letting me know when you gave the meds last night, but that's really not necessary and that I trust her to give them accurately and appropriately.  But if she needs my help in any way, if there's a change in status for Manny, to please feel free to wake me up.  I have no clue how she actually took it but she seemed to get the message.  I'll know about 1am (when the first night med is due). 

Hey ... Does everyone feel like they're getting an honorary medical degree by reading this blog? 


  1. Becky Browder NeustadtJanuary 27, 2012 at 7:56 AM

    I was just thinking about how you have earned several medical degrees yourself! I hope it's the 50% that means it was a fluke and that on Monday a new PICC line lives in little Manny.
    Excellent delivery to the night nurse. I am also getting a Gentle Assertiveness Degree from your blog.
    I pray for uneventful and for you and Manny being able to vacate on Monday or soon after!
    God Bless you, Beth, and God Bless our little buddy, Manny. xoxo

  2. hope your night went smoothly and the nurse got the message. :)