Our ongoing and everlasting journey....

Our ongoing and everlasting journey....

Tuesday we met with an immunologist for the first time at Lurie's.  Why we haven't seen one yet, who knows, I'm just glad we have him on our team.   Zoe has chronic fevers, which seem to appear every 2 weeks or so.  Some low fevers, some high and never has any other symptoms that show that she could be getting sick.  No runny noses, no cough, not lethargic, etc.  We are stocked with Tylenol and Motrin and quite honestly, I don't want her to survive on that stuff.   It was a very long appointment going over her history and every nook and cranny you could think of.   They want more labs on her to see if her immune system is working.  We've always assumed its not due to her being polysplenic, but now they will test to see if her spleens work.  This is the Howell Jolly Body Test.  If her immune system comes back "normal" we still have to keep her on the daily penicillin as this test isn't very accurate, but then we will move to on to Rheumatology to see if there is any inflammation going on in her bones (i.e. arthritis).  If it comes back abnormal, then we will continue testing for autoimmune issues.  They also want us to consider doing some genetic testing for fever disorders.  As we were going back to Lurie's on Wednesday, I requested that we do all these labs at the same time as GI's work orders.

Yesterday, just Zoe and I headed back to Lurie's.

We spent the morning at the hospital (getting 6 vials of blood and a belly ultrasound).  The ultrasound was nearly 90 minutes long (and she was a trooper).   Thank goodness for Ipads and televisions in each procedure room.  The tech couldn't get all of the proper shots (and I now realize why and I will bring that up in a minute)....

Instead of driving and dropping Zoe off and returning to work, I decided she could come to work with me for a few hours.  She had a complete ball at my work.  She pretended to "work" on the computer, try to fit herself in a redweld/expandable folder, took some trial exhibit stickers and put them on paper, and of course watched Frozen while doing all of this.   I needed to come in to work to catch up on some things.  She was a very good paralegal student.   Not to mention she loved all the attention my coworkers gave her.

We received our GI lab results and ultrasound results today.  Zoe's GI doctor emailed us her results.....long story short her liver panel came back normal and her ultrasound showed an enlarged bile duct.   They want to do an MRCP  (This is an MRI that focuses on the bile duct, gall gladder and pancreas and creates a 3-D reconstruction).

Her ultrasound in January did not show an enlarged bile duct.   His concern is for a condition known as choledochal cyst.  This is a situation where there is malformation of the bile duct during development.  Now it may come back that it is normal, but if it is a choledochal cyst, it may require treatment for her long term (meaning years) health.  Sometimes, it can cause intermittent bile duct obstruction that requires some drainage.  He doesn't believe she is any immediate danger.  Her liver numbers are reassuring, but we need to determine the cause of the enlarged bile duct (hence causing her pale stools).

I'm just glad Mike and I have been persistent on the issue of white and pale stool....it just isn't normal.
I'm mentally and physically drained.  These hospital appointments suck the life out of you.  We have had appointments since mid January.  On top of working full time, taking care of the house and the family, I have no idea how I (we) function on a daily basis.  I need sleep (and coffee and wine).  So we still have more tests....

Till next time.