Tuesday, August 7, 2012

A Day in The Life

Happy Summer!  Seems that uveitis doesn't know that we are are trying to have a summer vacation.  Charlotte still has eye appointments & gets her weekly shots Methotrexate & her "every 6 weeks" of Remicade.

So if you have wondered what these days look like for Charlotte or what these drugs do that she has to take so frequently, then let me take you on a "day in the life" journey of "Remicade Days."

Remicade is a biological drug that is a TNF inhibitor.  

A wha?!  TNF is a protein in our bloodstream that carries the messages to the brain saying we are sick, "send in the white blood cell troops!"

But she isn't sick.  That's the problem, she isnt sick and she doesnt need those messages sent!  So those white blood cells start hanging out in her eyes where they arent needed.  If we left the white blood cells and didnt treat this, she could get glaucoma, cataracts or the worse of the worse.

Remicade kills the messengers that want to send in more white blood cell troops.  Coupled with Methotrexate which is a chemo drug, an immune suppressant that kills the white blood cell troops, these two drugs are working for Charlotte in keeping her uveitis in check.  And every few weeks we go back to the eye doctor so she can look through the slit lamp and determine if there are cells (she will count them) or not.

So these two medicines kill the messengers and the troops.  BUT!  What if a REAL virus comes along?  Or a REAL bacteria?  It takes Charlotte at least twice as long to get rid of it as a healthy child.  The common cold isnt so common for Charlotte & I've talked about that at the beginning of every school year here.  She just doesnt have the core in place to handle it, we're continuely trying to kill it all to keep the arthritis (uveitis in the eyes) quiet.
200mg's of Remicade.  Have never changed the dosage amount since she started at age 2.
The day starts out like this:
Before the nurse comes, I put lidocaine (numbing cream) on her vein & get her hydrated with a smoothie.
Its a half day process because Remicade is an iv infusion given by a nurse.  When she comes, she also gives the methotrexate so we dont have to give that shot to Charlotte that week.

The day before, we get a big box in the mail with the medication & any extra tools the nurse needs.  
I feel like we are a little hospital at times.  This machine stays at our home 24/7 with the stand.  It holds the remicade & goes with Charlotte where she wants to go.

Besides drawing blood, Charlotte has to submit urine to be examined.  They are watching her liver because the weekly methotrexate shot (chemo drug) can really wreak some havoc on the liver. 

The nurse is here so after she gets it all set up & everything ready to go, off comes the lidocaine & in goes the 'pokey.'
Charlotte plugs her nose because she hates the smell of the rubbing alcohol.  Forever she will have memories of that smell, I'm sure.
 Charlotte does AMAZING with this.  And I get to say that NOW because when she was two, she used to throw such an amazing fit, I really thought we would have to get a straight jacket.  I wanted her on horse tranquilizers :) Or give them to me.  She was the strongest preschooler in the world.  Now she sits there like a champ.
 Pulling blood out for samples and then flushing it out with saline.  Getting ready to give Methotrexate & then onto the Remicade.
 Charlotte is patient and so is our Nurse!  Nurse Trish is the sweetest nurse we could ask for!
 Now its time to hang out for a few hours while Remicade slowlllllyyyyy drips & Charlotte gets sleeeeepy....
 And Grumpy too.... something about Remicade days, sleepy & grumpy... some day she will just sit back and put her feet up and take a nap right!?!?  Maybe...

That's a "day in the life" of a Remicade treatment for Charlotte.  This usually takes place on Fridays and is between 830am-1230pm.  And after the nurse leaves, Charlotte is usually off playing, renewed energy & happy to be done!!