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Long night, long day, line’s out

23 Dec Long night, long day, line’s out

Posted at 01:28h in Uncategorized by
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It was a terribly long night for our Bug.  Temps over 105 multiple times overnight.  IV tylenol (our old friend from last year) would not touch it, so we had to bring in a cooling blanket.  He was shaking and throwing up from fever most of the night.  We knew the line was growing gram negative rods, a bad sign, and that he was headed for sepsis unless the line came out immediately.

About to leave for surgery; cooling blanket machine in foreground

Luckily, they were able to take him first case.  The line removal and anesthesia went well with some additional stress-dose steroids on board.  He has two big peripheral IVs, one in his right arm and one in his left leg.  The leg IV is really stressing him out, and it means he can’t stand or walk until it comes out.  
He was still febrile going into the OR, but his temperatures have been normal since he came out.  We are not out of the woods yet.  His heart rate is still up.  Anesthesia can temporarily mask/reduce a fever, so we will be watching him like a hawk overnight.  His ferritin is going up.  However, we are unsure if it is an early sign of a flare or just a response to the infection.
Resting post-surgery in his room
As of tonight, we know that the line is growing one of two bacteria, more than likely pseudomonas.  A bacteria that is the bane of every severely immunosuppressed person and that is extremely hard to treat.  I will explain more about it tomorrow when we know more.

I know I end every single post the same way, but I honestly have no other way to express it: we are beyond thankful for your prayers for our Buggy.  He could use every one right now.  I am extremely grateful that the kids are blissfully unaware of the date of Christmas, but we are still struggling with an extreme sense of disappointment and frustration at the entire situation.  For that reason, we would greatly appreciate prayers for our whole family.

I rarely do this, but here are some specific prayer requests:

  • For Keegan to remain fever-free and find comfort and rest overnight
  • That the infection does not spread to his blood stream or heart
  • That this bacteria (which can be very drug resistant) will respond to treatment
  • That his peripheral IVs will last us until the new line can be inserted later this week (BIG request)
  • For cooperation and communication between the doctors caring for Keegan and Gray and me
  • For our endurance and strength through this holiday season
  • For every other family enduring these trials with their precious children now and throughout the year