Sunday, May 22, 2011

Best laid plans

Keegan has rewritten this legendary poem..."the best laid plans of mice and men always go awry."  It doesn't even surprise me anymore.  Although, the disappointment remains.

Keegan's blood cultures are negative, and he has been fever free since Saturday morning.  No line infection.  Thank the good Lord.  However, a strain of bacteria was identified in a urine culture that was sent out, so now he is being treated for a urinary tract infection that he almost certainly does not have.  Try to follow me here because this is a touch complicated.

  • When Gray arrived at the ER with Keegan, they drew the obligatory blood cultures from his PICC line and bagged him for urine.  This is the standard protocol that we are familiar with.  The ER nurse did not clean him before putting the urine bag on.  It is not necessary for a standard urinalysis and didn't immediately set off any red flags in Gray's mind.  If he had been told or expected that a true urine culture was going to be sent to the lab in addition to the urinalysis (which is just a breakdown of the cells and proteins in your urine, not for identifying any bacteria), he would have insisted on a thorough cleaning and likely an in/out catheterization for a good, accurate sample.  That's just the way a culture should be done.
  • Keegan's urinalysis from the ER that morning was fairly normal and not indicative of an infection.  When the team walked in yesterday and said his urine culture was positive, we were all obviously very surprised and yet not in the least bit convinced that it was true.
  • It is almost certain that given the particular bacteria identified and the failure to follow protocol, this was a contaminated sample, and Keegan does NOT have a urinary tract infection.  However, the bacteria involved is very, very dangerous and not what causes your everyday UTI.  If by some chance it truly is in Keegan's urinary tract, it could invade his kidney and his bloodstream quickly if not treated.  
  • Even though we are 99% sure that it's not accurate, we are obligated to treat him for it because it is just too risky for us to be wrong.  We need to have a clean sample from him at least 24 hours before his heart catheterization, and we want to give him enough time off the antibiotics for his bone marrow to recover in time for the steroid pulse.  
SO...Keegan's heart cath and steroid pulse have been cancelled for this week.  We are planning on rescheduling his cath for the following Monday or Tuesday and then remaining inpatient for a few days to monitor him through the first phase of the steroid pulse to treat his graft-vs-host disease.  

I know this is the right thing to do.  That does not mean that I like it in the least bit.  We thoroughly questioned the transplant team this morning and debated with them the merits of waiting or proceeding per plan.  They are still of the opinion that Keegan's fevers are inflammation-related in response to the many disease processes he is battling right now.  Unfortunately, they do not think the fevers will stop spiking until we can get that under control.  I hate putting off this course of treatment even a minute longer than we are forced to.  Keegan is showing us in many ways that his body is struggling under the weight of it all.  His bone marrow, his blood pressure, his kidney function, his GI problems, and now recurrent fevers.  We have already had to double his blood pressure medication after just a few days.

If we wait, something will always crop up.  I fear that at some point we will let it get so far ahead of us that this hill will become a mountain.  He may be struggling now, but he is stable.  I am terrified of not being able to say that.  We are all very aware that Keegan's kidney is not going to hang on forever.  What if it gives up before we address his other issues?  The logical part of my brain obviously grasps that all that won't happen in one short week.  The mom part of my brain, however, wants to fix my son, wants to stop his pain, and wants to do it NOW.

For tonight, we are home.  For this week, we will proceed with Keegan's usual course of therapy visits, clinic appointments, labs, and dressing changes, with an extra visit for a repeat urine culture.  We are praying that we stay home through this week and that Keegan is as ready as he can be for his cath and treatment starting next week.  Beyond that, we are sincerely praying that Keegan will tolerate this plan and be home by Audrey's birthday.

We are running on empty.  We would certainly appreciate your prayers, encouragement, and support for our Bug at this difficult and nerve-wrecking time.  Thank you once again.  Truly.  Thank you.

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