Wednesday, September 14, 2011


I know I was sleepy writing last night's post.  Guess I didn't realize how badly until I read it again just now.  Sheesh.  Pardon my poor grammar there.

Tonight, I'm just as tired, but it's going to be a long night ahead.  For those reasons, I'm posting two prayer requests only tonight.  I will try to update in more detail tomorrow after we have a big team meeting with all the attending doctors.

  • A few extra prayers for Keegan.  His labs took a huge nose dive this afternoon, and inflammation markers were through the roof.  This prompted an immediate response from the cardiology and rheumatology teams.  They wrote for a whole slew of new lab tests that required an insane amount of blood.  We'd been dancing around a blood transfusion the last few days, but now, it is an absolute necessity.  Again, I will explain more soon, but it appears Keegan is in a cytokine storm (you can look it up).  There are two explanations for his disease process.  The doctors think what he is fighting now has been an ongoing process for at least the last three years, if not from birth.  Again, we will know more about which one they are leaning towards tomorrow.  Neither one is a "good" thing.  Let's leave it at that for right now.
  • To stop the inflammation without having to put him in the ICU tonight, they immediately wrote for IV tylenol, benadryl, IVIG, and then follow it all up with a blood transfusion.  That is a lot of fluid on his already swollen little body, so we will chase it afterwards with diuretics.  We are extremely thankful that the team caught this early and responded quickly.  Otherwise, things could have gotten very scary.  Despite all this, he actually seemed to feel a little better than yesterday and was in generally good spirits all day.  His temperature stayed between 99 and 101 again.  
  • Please pray for guidance, clarity, and wisdom for the medical team, Gray, and me tomorrow as we try to get a good plan in place based on what we know.
  • Lastly, please pray for our little friend, Rylynn.  She has had to have a chest tube and abdominal drain put in to help her out and is now back on a ventilator.  Praying she stays strong and brave waiting on her angel heart.  Mostly, we're praying for that miracle to come soon!
That's literally all I can muster tonight.  I will do my best to explain it all as soon as I can.  Been a bit busy around here.  Thank you so, so very much.

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