Wednesday, January 1, 2014


We try to look "at the bright side" and not focus on the negative news.  We try to stay positive.  However today we got a positive we didn't want:  Eli's blood cultures.  Two were drawn the night he was admitted and today we found out they were positive.  Positive in medical terms is not usually a good thing.  These results mean that Eli has an infection in his blood.  The good side of this is that we know what's wrong and can work on fixing it.  The bad news is that he's battling his third round of staph aureus in eight months.

And it gets worse.  He's been started on his third six-week course of strong antibiotics.  He'll have to have another PICC line placed like he did in the spring and in August.  When he finally gets to come home it will be with the PICC line and antibiotic therapy. 

What's causing all this?  Although the final lab results aren't back until tomorrow, we're certain it's the same "bug" he had the other two times.  Both times it was Methicillin Sensitive Staph Aureus so we suspect it will be the same thing this time.  Assuming it is, that means it has survived two rounds of tough antibiotic therapy and laid dormant for nearly three months before acting up this time.  That means it's hiding somewhere in his body.  The most likely place it's hiding is on his pacemaker.  The Infectious Disease staff really, really wanted the pacer system to be removed when this happened last time, but Eli responded very well to the treatment so everyone just hoped that took care of it.  But now it's obvious that his pacemaker and wiring will have to be removed.  That means another surgery.  Because it's a holiday, we haven't talked to the cardiac surgeon, but we think removing the system will likely involve opening his sternum again to get the wiring out.  This is not a simple thing.  And we also don't know for sure how he will be without the pacemaker, but we know he can't keep it and risk getting sicker and sicker. 

The "funny" thing is that he's actually feeling a little better.  Eli still has a cough and runny nose, but he's been without fever throughout the entire admission.  He has more energy and lots of silly moments.  Before the lab called with the culture results, the hospitalist and staff on this unit were nearly done with his discharge paperwork because he was doing so well.  They knew they were waiting for lab to call when the results were in, but based on his physical exam they truly thought he would be going home today.  No promises were ever made to us though and when the doctor came in to tell us the cultures were positive it was obvious she was upset for us.  They love our little guy here and it hurts them to have to deliver bad news to us.  It hurts us worse to hear it, but it's good to know how much they care!

The nurse practitioner from Infectious Disease came to talk to us and set up our game plan.  An IV was started on Eli so he could receive strong antibiotics.  Until this afternoon, the only meds Eli was getting were his usual home medications.  Nothing new had been added because he was doing well.  Eli will be getting the same antibiotic he got the other two times, but at a stronger dose.  The dose has to be stronger this time because they're almost certain Eli doesn't have a hairline fracture in his foot.  They think the infection is in his bones (osteomyelitis) and causing the foot pain/limping.  That would explain why he's had two sets of xrays a week apart and neither show any sign of fracture.  A stronger/higher dose of antibiotics is required to penetrate the bone so it can treat/kill the staph hiding out there.  There's actually another antibiotic they prefer to use for bone infections, but Eli's strain is resistant to that antibiotic so it wouldn't be beneficial to use it. 

Bryan left a little while ago.  It's killing him to go back home tonight, but he's supposed to go to work tomorrow and he is out of sick time and low on vacation time.  Besides, tomorrow (Thursday) is likely a day of planning and very little action.  Here's what we think and expect to happen:

-find out the exact identification of what's growing on his cultures and what antibiotics it's sensitive to.  Everyone is expecting it to be MSSA (methicillin sensitive staph aureus) like the other two times, but we need to make sure.
-for Infectious Disease and cardiology to discuss the best plan of action (which everyone anticipates will be to remove the pacemaker).
-coordinate surgery to remove the pacer system and place the PICC line.  We will insist the two be done together so Eli doesn't have to be sedated more often than necessary.
-there may also be some testing done prior to any scheduling so they can find out how he does without the pacemaker.  That will give us an inkling of what to expect after the pacer is removed. 

All this means that we will be here for a while.  I didn't ask for a timeline, but I did ask Angie (Inf Disease nurse practitioner) what the criteria would be for Eli to go home.  She said that he'd have to be well established on the antibiotic regimen, have negative blood cultures (starting tomorrow he'll have daily blood cultures), be well recovered from the surgery, including having stable heart rhythm and rate without the pacemaker, and whatever other criteria is set by cardiology. 

The earliest we expect surgery to be is Friday.  Again, we'll know more tomorrow.  Whenever it is, Bryan will be back, but until then he'll be home with Zachary and to work.  I don't know when I'll get to see Zachary again or when the boys will see each other again.  Because there's so much illness going around right now, the hospital has implemented a no visiting policy for anyone under the age of 12.  Right now that's just effective in the PICU (where we anticipate Eli will be after surgery) but it's just a matter of time before it's hospital-wide. 

Eli knows he's in the hospital and it frustrates him to be in protective isolation.  We've told him the play room is closed because they have to fix some things, but I don't know how long he'll believe that.  He's had a lot of fun, playful times so far, but mostly it's fussiness and frustration because he knows he's here and things he can't control are happening to him.  The kid is too smart. 

Bryan and I are okay.  Sort of.  I don't think either one of us is surprised by the news, but we were so hopeful for a better start to the year.  My emotions are all over the board right now.  Sometimes I'm grateful we are pretty sure we know what's happening and there are things we can do to fix it.  Other times I just want to slump over in a pile of tears and cry until my eyes fall out.  I'm tired.  Physically and emotionally.  But just when I start to let myself get lost in those thoughts, Eli will laugh at something in one of his many movies we have in the room, Bryan will send a text with a nice message, or I'll look at a picture of Zachary's smiling face and it all helps me remember the good things.

Specific Prayer Requests:
-that the cultures show what we expect so we can deal with what we "know" and don't have new variables to worry about
-that a plan is agreed upon by Infectious Disease and  Cardiology and we can act quickly so recovery can begin
-for the four of us as we deal (again) with these stresses and separation

Thank you for all your prayers and support.  Things are tough right now and have been for a while, but we know they could always be worse.  Eli is relatively healthy despite this ongoing infection, we have options available (maybe not options we like, but options nonetheless), and we are comfortable with the people and care we have here.  We just didn't want to be here!  Maybe our better year is coming later in 2014.

1 comment: