Wednesday, January 15, 2014

Our "Negative" Attitude is Paying Off

Good medicine and the power of prayer (not necessarily in that order!) work:
- Eli's blood culture drawn on the 11th is NEGATIVE
- the blood culture drawn on the 13th is still NEGATIVE (there's still time for it to turn positive, but it's good news that so far it's negative)
- his C-diff was NEGATIVE
- he didn't throw up this morning (he has the last three mornings)
- his poopy diapers are more normal looking and not the nastiness they were Sunday and Monday
- he's tolerated his lower heartrate since the pacer was turned down

We're getting closer to being able to set a surgery date.  At this point we're waiting for Infectious Disease to decide how long he needs negative cultures before allowing surgery.  We're very loosely planning for next week, but that could easily change.  Of course we'll let you know when we have a true date set.

Eli's been feeling better yesterday and today, although his appetite is not what it was last week.  It is slowly getting better.  I do think he's feeling "different" since his pacer has essentially been turned off (not really off, it'll kick in if his rate gets below 40).  It seems like he's more tired than before and when he wakes, it takes a little longer for him to really wake up.  These are things we experienced while he was junctional before he had his pacemaker anyway.  Dr. Steinberg told me today to expect Eli will have temporary pacer wires when he comes out of surgery.  That's just in case he doesn't tolerate the junctional rhythm after a big surgery.  They would be able to externally pace him if needed.  Hearing that actually made me feel a little better!  Dr. Steinberg doesn't anticipate any problems but just wants to be cautious. 

Overall, things are going well.  But it's hard for me to realize that this is just the very beginning.  He's starting to have clear cultures, but the real treatment to "fix" this infection is to get the infected hardware out.  Doing that requires major surgery.  A redo of the surgery he had last April.  Because it's a redo, it will be more complicated than the first time.  Then, aside from at least six weeks of IV antibiotic therapy, we don't know what to expect after surgery.  He was inpatient for seven weeks after his first Fontan due to a multitude of problems.  Who knows what will happen this time?  We're just trying to take it step by step, but occasionally I look up to see how many steps are in front of us and it's daunting.

One year ago today, my grandmother passed away.  She led a long, full life, but that doesn't stop us from missing her.  Please keep my aunts, uncles, and cousins in your prayers as we reminisce about this neat woman.  She would make me cheesecake for my birthday because I'm not a huge fan of cake.  I'm craving her banana bread right now!  She said multiple rosaries a day for Eli and I know she and my dad are doing all they can up there to watch over us down here.  We love you, Granny Myrt!

Thanks for keeping up with us.  Things are starting to fall into place, but we still need your prayers.  We appreciate all the comments and support you provide! Updates to come as we know more!

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