Friday, January 10, 2014

The Verdict

Sorry for no updates.  We only had bits of information for several days and I didn't want to keep correcting and updating the info.  There's still some info the doctors are waiting for, but they have enough for everyone to basically be at the same conclusion regarding where/why Eli keeps having positive blood cultures.

After much testing, doctors are certain the source of Eli's staph aureus is the conduit, or graft, that was placed during his Fontan in April.  That doesn't mean it was infected from the start, but it's now the source.  It could have been the problem all along or staph germs could have settled there after Eli had the abscess on his sternal incision in May.  We don't know, we won't ever know, and it doesn't help us to worry about those details. 

Now we move on.  What's the fix?  Unfortunately the "fix" is surgery.  The surgery we wanted to avoid.  The infected material has to come out and it has to be replaced during that surgery to keep Eli's special circulation intact.  The only way to get it out and replace it is to have his Fontan redone.  While he's in surgery, they'll remove his pacemaker and the wires, as well as remove or replace any other foreign material they can. 

We don't know when that will happen.  There's still some testing that's being reviewed and lots of things have to come together.  Also, despite over a week of IV antibiotics, Eli still has positive blood cultures.  That means he has active staph aureus in his blood.  Ideally, he'll respond to treatment soon and have negative cultures.  Docs want him to have at least a week of negative cultures (possibly more) before he goes into open heart surgery.  Dr. Steinberg also wants Eli's pacemaker turned off about a week before surgery so we can monitor how he does without it.  That will help gauge how he will do after surgery.

How's Eli?  Actually he's doing really, really well.  He's much healthier than the other two times he was septic with staph.  For the most part he's not had any fevers, he's got energy, and his limp is getting better.  All that good news makes it harder to believe he needs this surgery.  We can't only treat with antibiotics again and hope for the best.  Even though Eli is acting like he feels well, the testing shows a lot of infection.  It's definitely in his sternum and in the graft.

I have to say that I don't think either of us is very surprised by this.  When we heard the doctor tell us Eli had positive cultures this time, that surprised us a little.  However once we digested that information, we pretty much knew this was bigger than anyone originally thought last spring and would take a long time.  Even now we don't know how long we're here.  We don't have any idea when surgery will be.  When he finally does get to have surgery, we have no idea what his recovery will be like.  Last time we were here seven weeks postop.  It could be similar, it could be shorter, it could be longer.  We're already on Day 12. 

Bryan and Zachary are on their way.  Eli and I haven't seen Zachary since Dec 30.  Zachary will go back to Washington Saturday and Bryan will on Sunday.  It will be sooo good to have the four of us together again, even if it is in a hospital room.  It doesn't matter where, just as long as we are together. 

Specific Prayer Requests:
- the antibiotics do their job quickly and Eli's blood clears soon. 
- that Eli does well with the pacer turned off whenever that happens
- for no new surprises (unless they're good ones!)
- for our family as we are going to be separated for a long time again
- that this is it.  The "fix" to Eli's ongoing staph problem

Thank you for continuing to pray and for all the support.  It's going to be a long road but we'll make it.

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