Dec 15, 2011


Wednesday was a (relatively) uneventful day.  So I'll just include the details today on Thursay and combine the days.

Overall status:
He is still stable.
Has only low grade fever. (Good sign)
Has all positive blood cultures still. 
His urine culture is now negative (first one was positive).
His gall bladder and kidney look different than they did in September.  (They're not sure what to make of it.)

They have to do a blood stick every day until 3 come back negative.  (We have 0 so far.) This is becoming more and more of a challenge so the IV team is the only one who comes now.  They think "big picture" and try to save the veins, not just "get blood" (as most do). 

Because we don't know where the second "seeding" area for the infection is, they are having to do a system by system check.  Wednesday they had an opthamologic exam to look for fungus.  Before the doc arrived, they had to do 3 sets of eye dilation drops and sit in a dark room for an hour.  (No pre numbing drops!)  He did amazingly well.  And when it came time for the exam, I thought for sure he'd fight her like he had cemented shut eyes.  But before she got here, we practiced, let him know it was just a bright light and no more owies.  This child did AMAZINGLY well!!  It was shocking how cooperative he was. 

And the good news: nothing wrong with the eyes. 

He is finally down to his original weight and slightly under.  He's on 1/2 calories of usual so I'm expecting him to lose a lot more. Why half?  He normally has TPN plus lipids.  They have stopped the lipids because that's something the yeasts THRIVE on apparently. 

Today I asked his hospitalist a question.  It's been brewing in my mind.  OK you know how he has c-diff and even if he isn't currently showing symptoms and has been treated, he will show positive forever.  I wondered:  Is it possible he will always show positive for yeasts?  Doc said no.  It HAS to get cleared or you die. Pure and simple.  We have this yeast all over our bodies and it might cause a slight irritation.  But in the blood, it is fatal if not treated.  Now he's been being treated this whole time.  It's just being effective yet. 

For now, Manny is (mostly) himself and is playing happily (most of the time, just gets grumpy easier than normal).  He is loving his ipad!  Even with both of his hands taped down on iv boards, he's able to manipulate it.  It's truly amazing how intuitive these games are that a 2 year old, who has never seen it before, who has low mobility and limited use of hands can perform the tasks. 

1pm Thursday: Music therapist came by. Manny cried when she arrived and again when she left.  In between, he had a fun time.  She was great about letting him touch all the instruments and picking the songs.

Do you notice he's playing with his ipad?  Even with 2 IV boards, he can play this thing!  And Kaley?  Would anyone else like to vote with me for "World's Best Big Sister?"  She deserves an award for sure!


  1. I am certain Kaley is an angel here on earth! I love seeing Manny using his Ipad! That is so cool.

  2. I agree with Sherri. Thanks for using your reserve to update the blog. I am astounded at Manny's resilience. You are all in my prayers.

    Carolyn (in Las Vegas)