Feb 11, 2012

What the heck?

We were discharged on Tues, Feb 7 with a shiny new broviac.

Tuesday evening, low grade fever.  Thought little of it.
Wednesday, higher fever and rash (looked like 5th's disease).
Thursday, moderate, then low  fever and rash (looked like Scarlet Fever)
Friday, fever gone and very little rash.  (Only on chest.)

Friday we also had a grand time at the Florida State Fair.  FUN!

Friday night went to bed just fine.

3am ... woke up screaming in pain every half hour or so. 
5am ... woke up screaming in pain every 10 minutes.
6:30 ... screaming in pain continually.  Saying it was his "tummy" but reaching for his Broviac. 
Got dressed and headed to the ER. 

8am ... he was still in pain but also falling asleep.  I figured that due to his intermittent sleep in the night, this was no problem.  But then started to notice, he would scream in pain and then almost "pass out".  His eyes would roll in the back of his head and he would be out again. 

Since about 9am (I write this now at 7pm), he's been "asleep".  He is not waking up for more than about 30 seconds - 2 minutes at a time.

The doctors have gone through many theories today.  They've tested them all very quickly and efficiently.  His blood tests are all (relatively) normal. His chest xray shows broviac in place. ALL good news!  But that doesn't explain the pain and the unconscious state. 

Ultrasound seemed to indicate he had Intussusception, a bowel issue that could explain MOST of his symptoms.  And the child can actually be in so much pain that they basically "Pass out".  But we did a further CT and it didn't show that.  Instead, it showed acute acalculous cholecystitis ... an inflammed gallbladder without stones. This is something that can happen with long term (defined as over 3 months) use of TPN. 

This doesn't explain his altered mental status but does explain his pain.  UNLESS it's already in his blood stream and in that case, it can cause sudden sepsis, which could cause the mental status.  The blood tests don't show that but it's also early so it just might not show up yet. 

For tonight, they are going to put in an NG tube.  That's a tube that goes from his nose to his stomach.  Normally they are used to put food into the stomach.  In his case, they're going to use it to drain the bile, etc. OUT of the stomach.  It's producing so quickly that he's gained over a pound today.  Normally, venting via Gtube is enough but today it is not. 

They have him on massive amounts of various broad spectrum antibiotics.  They are watching for a fever to spike.  He's on a heart monitor, CO2, respiratory rate, blood pressure, etc. to continually monitor him. The plan for the night is just to watch him... closely.    And then reevaluate in the morning.  Surgical team has already been contacted and is observing him.  Infectious Diseases will be here tomorrow too.  Neuro consult likely if the mental status doesn't change. 

In the meantime, all the vital signs remain eeerily "normal".  From the blood work and vitals, you'd think everything was perfect.  By looking at him you'd think something is VERY VERY wrong. 

11:30 pm, he's still altered.  But is waking up more and more often with retching (like he's trying to throw up but can't) and pain again.  Poor guy.

What the heck is going on??


  1. Becky Browder NeustadtFebruary 11, 2012 at 11:56 PM

    oh, Beth. Goodness. What the heck indeed. Praying constantly for this sweet sweet little boy. And for you - his rock.

  2. PRAYING for clarity for the docs to see what is goin on in his little body1 poor baby! poor mama! big hugs from Louisiana! Storming heaven continues!