Wednesday, December 22, 2010


As of last Friday morning, Scarlett had been given no medicine.  She was exclusively breastfed (other than a small amount of formula the pushy postpartum nurses forced on us).

Today, we are on a very different schedule.
  • Decadron: Cortozone steroid to reduce swelling around her brain.
      • Dose: Every 6 hours, by mouth.
    • Pros: Gives us more quality time, minimizing the pressure the tumor exerts on her skull.
    • Cons: Horrible taste that makes her gag; causes increased apetite, fussiness, agitation, stomach acidity, vomiting and sleeplessness.  Stomach acidity is causing a fierce diaper rash.
  • Zantac: Antacid
      • Dose: Every 12 hours, by mouth.
    • Pros: Calms her stomach upset caused by Decadron
    • Cons: None, yet.
  • Tylenol: Pain reliever and fever reducer
      • Dose: Every 4 hours, by mouth
    • Pros: Eases discomfort caused by repeated IV sticks and stitches.  Tastes like grape candy.
    • Cons:  None, yet.
  • Anitfungal Medicated Diaper Cream: Diaper rash treatment
      • Dose: Every diaper change, on tush
    • Pros: Reduces inflammation caused by acidic poop.  OUCH.
    • Cons: Sticky and messy, mostly for the applicator (mom or dad).
  • Simethicone: Gas reducer
      • Dose: As needed, by mouth
    • Pros: Minimizes gas pains caused by swallowing air
    • Cons: None, yet.
  • Sweet-Ease: Sugar water
      • Dose: Constantly, via pacifier dip
    • Pros:  THANK YOU LORD FOR SWEET-EASE.  She is addicted to it, but it has gotten us through IVs, injections, diaper changes, fussiness, and no-feed hours.
    • Cons: Sweet tooth before she has teeth.  The little cup spills everywhere and is so sticky we might as well spread syrup along the crib, the floor and the baby.
We are still trying to figure out a functional schedule for all of this.  Add this to vitals and neurological tests every 4 hours, and we have had almost a week of very long days and nights.


Anonymous said...

Try to give Decadron IV (intraveneous) formulation orally, it tastes better.

Jeff said...

* Prayer
# Can be given constantly by anyone!
Apply directly to the whole family
Pros: Freely given
Offers peace and comfort
Is the source of miracles
Neverending supply
Can be taken with all medications

Cons: ???

Peace to your family.

Anonymous said...

Burts bees diaper cream is the best stuff on the market for diaper rash. It worked much, much better for my sons diaper rash than the triple mix. Still praying!

Anonymous said...

Sending you so much peace and love at this stressful time. I don't know you or your family but what your beautiful little love is going through is heartbreaking. I will be thinking of you all over the holidays. So many of us Babycenter girls are praying for you. I hope the universe holds a miracle for your little girl.

Anonymous said...

Just letting you know that Scarlett and your family are in My families prayers (all the way here in Poland). We are very religious Catholic family and God has answered so many of My own personal prayers. I have never believed in prayer more than I do today. We will continue to pray for her treatments and recovery throughout this whole ordeal. (I'm also a member of the Oct. 2010 BBC board.)

DMV47 said...

Tight schedule indeed! She will get through this...but maybe not the Sweet-Ease addiction. LOL *hugs* the way, this is Mel :)

Anonymous said...

Scarlett shares her middle name with my 4 month baby Grace. Scarlett is in my thoughts and prayers all day long. I pray that you and your family can stay strong through this.

Anonymous said...

I am thinking of and praying for Scarlett always. May Peace and God's love be with you all.

Mamatobesuz said...

Brandi, a group of us from babycenter are wondering if you have a fund set up at a bank for expenses or if there is a paypal account where you could take gifts?

We're all incredibly touched by your story and want to help in some small way.

Anonymous said...

You are an amazing family and mommy! You and your family are in my thoughts and prayers. I wish you happines and healing for your little girl. Babies are strong. Keep holding your head up and enjoy every moment you have with her.

Unknown said...

I found Scarlett's story through a friend and I want you to know that she and you are in my thoughts and prayers. My own daughter is less than a month older than Scarlett (born 9/21/10). I am a pharmacist and I just wanted to let you know that just about any oral liquid medication can be flavored to make it taste better (specifically talking about the Decadron, but it goes for anything she may be taking now or in the future).