Saturday, May 12, 2012

Fine Tuning

Scarlett has had a rough couple of days.  She opened her eyes on Thursday evening, putting on quite a show for her grandpa and me.  She waved, clapped and laughed as she finally was able to see after three days of swollen-shut eyelids.  We were so happy to see her coming back to herself.

Friday, she woke up in a bit of a funk that she has yet to shake off.  She is not really fussy, but not at all happy.  She whimpers at most touches, and isn't happy to be held.  Then, today the vomiting came back; her bed has been changed at least three times, and is pretty fed up with wet wipe baths.  This could be a symptom of a huge range of things; so much has changed for her in such a short time that it is hard to determine what is causing her discomfort.

We were moved to the quieter, smaller room of the PICU on Thursday evening.  Friday and Saturday, we waited through the day for a bed to become available on the recovery floor.  By Saturday evening, her symptoms were becoming varied enough that the neurosurgery team decided to keep her in the PICU for closer observation.

Despite the discomfort, the doctors are very happy with her recovery so far.  Her skull is remarkably round; it will take many months, close to a year for her actual skull shape to emerge as swelling and shifting will continue to change her appearance.  As the bones begin to heal, the screws and brackets holding her skull bones together will dissolve, allowing her skull to grow naturally.  Once the bones begin to fuse, her skull will be just as strong as everyone else's.  For now, she has an incision across her head like a headband from ear to ear, plus a small curved incision on the back where the shunt was placed. 

Her shunt setting is still being fine-tuned as her brain adjusts to the increased amount of fluid.  The new shunt is adjustable (or programmable), which means the flow can be changed depending on the need using a specially-designed magnet against the valve on the back of her head.  Right now, we need her shunt to hold on to CSF to fill her new skull and "reinflate" the too-small ventricles (fluid spaces) in her brain.  As the pressure increases, the shunt can be dialed down to allow more drainage until we hit just the right setting.  Because her brain has been through so much so quickly over the last few days, the unhappiness is not unexpected, but needs to be monitored with regular "quick scan" MRIs that check the fluid collections.  She has had two scans since surgery, and it sounds like we will have another tomorrow.  Once the doctors feel she has balanced out, we will go home and get back to our regular routine.

One hour after surgery
Day 2 - purple eyelids, no eyelashes, puffy face
Day 3 - Open eyes, tiny smile!  Bandages off with a round head.
Day 4 - sitting up, playing.  Mommy made her some fancy gowns for this stay.  :-)
Day 5 - Sitting independently, looking much more familiar.  Another mommy-made gown!
Just too cute!  She loves to watch Finding Nemo on her new iPad - so much that she won't take her hand off, even when she sleeps!

 Every day brings a lot of progress.  Pretty soon, she'll be back to her old tricks again!

13 comments:

Marcella said...

Been following your story since back in the babycenter days :) I adore Scarlett and will continue to pray for you guys! Just love her to pieces!! Xoxo

Jennifer said...

I just love that precious girl! Her head look amazing - such a wonderful drastic change so quickly. We have her and mommy and daddy in our thoughts daily. Hope her discomfort dissipates soon!! xoxo

Joel and Angela said...

Thankful that her surgery went well and that she is looking like her normal self. Happy Mother's Day Brandi! You are an inspiration to all of us. It takes a strong family unit to go through what you, Chris and Little Scarlet have had to endure. Praying for a speedy recovery.

Jen D said...

Happy, Happy Mother's Day!

Kelly L Boots said...

Happy Mother's Day to one of the Strongest Mother's there is!

Praying for Hope said...

She is a beautiful, beautiful girl.

Christina said...

Her round head is amazing! She is so cute and such a trooper.

Mum H said...

She looks great! Hoping she starts to feel better soon. Happy Mothers Day Brandi!

BBColt78 said...

Bless her little heart. We love you Scarlet. And Happy Mother's Day to one wonderful momma.

Julie said...

So glad everything is going well. It must be very hard for you to see your little one have to undergo that. She looks great! I wish with all my heart that her pain disappears very soon.

Jason said...

Oh my goodness! Scarlett looks amazing! We've followed your story from BBC, and am thrilled she is doing so well! Hopefully, ya'll can go home soon!

Heather said...

I have been following your story since BBC, but I don't think I have ever commented. :~/

I am seriously totally AMAZED by what the doctors were able to do for Scarlett's head! I mean, I know it's their job and everything, but to see how truly skilled they are is just....WOW!!!

She looks great. Keep up the good work! What a strong family you are. :~)

Haley said...

She is just beautiful!! You are so blessed. What a strong little girl you two have.