Evan – “Little Warrior” … It’s time to go to war.

I am beginning to hate getting phone calls at work.

I work in a lab.  I have an office with my own line but in theory I should never really be there much – I should be working at a benchtop playing with chemicals.  Think Beaker.  So when I was working in the lab next door and my office mate came over and said “I think Bill is looking for you – he is IM-ing me” and another lab colleague chimed in with “Oh yeah your phone was ringing when I was over by your office” my ears perked up definitely.  I had to get my testing to a place where I could stop and then go to my office – about a 5 minute delay.  When I walked in, my cellphone was ringing.  In my opinion, trying to get a hold of someone badly does not equal good news.

It was a phone call last Friday that told us there was an issue with Evan’s pacemaker.  It was a phone call this afternoon that made my heart sink even more for my little man.

Evan started the day out well – he was able to be moved from the PCTU back to the general floor.  He got a couple of his IVs out although he is still on 2L of oxygen through his cannula.  They also increased his normal dosage of Lasix to help remove some of the fluid from his body.  It is the fluid retention, the extra volume his body has, that is requiring him to be on oxygen still.  It was a pretty normal post op day 1. Evan was still pretty whooped and sleeping it off. When he was awake he was not happy about. And then at almost 4:00pm Dr. Hirsch walked in and sat down next to Bill…

It’s hard to recall exactly how it went down now. Bill’s mind was left racing for hours now and is, to be honest… mush. Dr. Hirsch calmly said that the milky fluid she collected during yesterday’s surgery came back positive for gram negative rods. WHAT?! What fluid, what are you talking about? Bill knew what this meant, it didn’t matter that she didn’t mention this detail yesterday. She honestly probably forgot or she didn’t want to worry us unnecessarily and we can’t fault her for that. She’s amazing and we owe her so much. It turns out that when Dr. Hirsch opened up Evan’s chest and pacemaker pocket she was greeted with a milky, creamy fluid.  A fluid very similar in texture to the one observed back in February.  She removed some material to be cultured, I assume cleaned out whatever material they found, and continued with the procedure.

As she continued to talk to Bill, it became clear to him why she said, “If it is infected, I think I’ll cry.” The it she was referring to was the pacemaker pocket. But cry? Really? Why is this any different than what he had in February (not that I want to relive February in any regard)? It’s massively different. In February it was not in his chest cavity, it was not in the pacemaker pocket, it was not below his sternum. Now it is.

It turns out that Evan has had an infection festering in his little body.  I presume that whatever was there previously was never fully killed and it is the same infection, lingering, waiting to rear it’s ugly head.  We’re told that this is more than likely the cause of the massive amounts of scar tissue.  His body, instead of presenting with a normal set of symptoms, like lethargy, fever, fussiness, has been waging war on this bacteria and left a battlefield of scar tissue.  Lots of it.  Scaring his poor little heart and chest.  It’s how his body coped.  Until so much was made that his pacemaker signal could no longer reach his cardiac muscle and gradually stopped functioning. If this had not happened who knows how long it would have been before we knew he had an infection.

The preliminary results came back as a Gram negative rods.  We are all suspecting it is the same organism he had in his previous infection – Pseudomonas aeruginosa. If you recall, it was this infection that had Evan hospitalized from Jan 31 to February 23rd of this year. See post: To the ER :’-(

Now that we know there is an infection, we have to totally change our gameplan and because it’s in his chest we have to get really serious.

Here’s what the gameplan looks like:

1. NOW – Broad spectrum antibiotics (Zosyn and one other that the name escapes me at the moment) until the ID comes back.
2. FRIDAY – Install a PICC (Peripherally Inserted Central Catheter) to provide prolonged intravenous access.
3. IN THE NEXT DAY OR TWO – Target the specific bacteria with different antibiotics if necessary and start killing bugs.
4. NEXT WEDNESDAY – Remove all artificial devices from Evan’s body. This includes the pacemaker and wires that were just put in yesterday as well as a piece of GORE-TEX fabric that was put in during his January 13th surgery to make later access easier.
   [note]The instant that the pacemaker and wires were introduced to Evan’s body they became “infected” and must come out. Antibiotics are delivered intravenously and thus are carried throughout the body by blood. Artificial devices don’t have blood flow, so no amount of antibiotics will kill bacteria stuck to a pacemaker. The GORE-TEX fabric runs the entire length of his incision below the sternum so Dr. Hirsch needs to open him up completely to get it out.[/note]
5. OVER THE NEXT SEVERAL WEEKS – Kill, Kill, Kill the bugs! Evan will be on a course of antibiotics to kill the bacteria that’s in his body. During this time he will have no pacemaker so his heart rate will be much reduced. His own rate is about 60 bpm down from the 110 bpm that he’s been at for the last year. This is adequate but not a rate that he can go home on, he’ll need to remain in the hospital and closely monitored.
6. LATER (We don’t know when) – Reinstall the pacemaker and the wires.
   [note]Dr. Hirsch will place the pacemaker and the leads in a ‘virgin’ area of Evan’s body. The pacemaker will be in his left chest behind his pectoral muscle. She will make an incision on the side of Evan’s chest under his arm to gain access to the side or back of his heart where she will install the leads. This will keep the new device away from the area where the tiniest bit of infection may still be lingering.[/note]
7. FINALLY – We continue IV antibiotics for an unspecified amount of time. Once he’s clear to go home from the pacemaker surgery we will continue the IV antibiotics at home through the PICC line.
8. AND THEN – We bust ass to get Evan eating and off the G-tube. Dr. Hirsch reiterated today her concerns about the g-tube being where it is describing it as a pathway for bacteria and too close to the chest cavity for comfort.

Some of the questions we have so far:

1. Evan has never run a temperature this entire time (or if he did, certainly one we nor any healthcare professionals noticed).  Does he have elevated white blood cell counts?  Is there any sort of immunological response that would have indicated an infection?  Was Evan’s only reaction that of creating more scare tissue?
2. Are there pockets or crevices in the body where blood doesn’t flow but where bacteria could “hide?” If so, how do we get it out?
3. How will we know when the infection is gone?
4. If the infection gets under control, can we assume that the massive amounts of scar tissue his body produces will be dramatically lower?  So he shouldn’t make enough scar tissue to make his new leads ineffective?  If the pacemaker leads fail sometime between now and Spring 2014 (due to scar tissue or whatever) would we just do the Fontan then?

It was another sad and exhausting day. Mom is back at the hospital with Evan and Dad is at home excited to go to work tomorrow.  😐

Sorry no pictures today. <shrug>