Tuesday, January 4, 2011

Surgery Schedule

I feel obligated to keep you all updated, as you have been riding this rollercoaster with us.  Daddy is rocking Scarlett, so I have a minute to type.

Tomorrow will be an early morning.  The anesthesiologist will come in around 5 to discuss and for us to sign consent.  Scarlett will get a final bath to make sure she is squeaky clean.  They will disconnect all the EEG monitoring electrodes.

Surgery is scheduled to begin at 8am PST.  We will walk her down shortly before that to hand her off to the surgeons.  They tell us it will take a while to get started, but we will get a call once they begin, and then no longer than every two hours.  They hope to be done before midnight, but will stop then either way. 

Technically, the procedure is called a craniotomy, which means the skull will be opened.  The incision will be a large crescent over her left ear.  If she does not tolerate anesthesia well, or has too much blood loss, they will stop and not go back in for a few more days.  If they have to stop, they will leave the bone off, wrapped in the freezer, and loosely cover the opening.  This was the most sickly fascination fact of the day (and sorry for those of you who didn't want to know that, but we did).

I was sure to ask what she would look like when I see her next.  She will have another mummy head wrap and a breathing tube, as well as a drainage tube from the top of her head.

We heard a lot of information today.  Some of it was not good news...neurological symptoms are emerging.  She does not visually track anymore.  She does not move her head much, and can no longer lift it.  Her reflexes are uneven and somewhat abnormal.  My heart broke a little when they told us her optic nerves maybe damaged and they don't know how much she is seeing.  I had been worried about her eyes for days, but was told they checked out fine.  Things change fast.
...

It's been a while since I started writing this post.  Chris and I have been taking turns rocking and feeding and reading and snuggling.  She's fast asleep now, and we've hit the mark where she can't eat anything else.  The rest of the night, we hope she get some rest and we will try to do the same. I'll post updates if and when I can tomorrow, but I know the prayers and positive thoughts will be floating our way, so we thank you.

31 comments:

Anonymous said...

Wow...this is a lot to go through for a little baby like that, we'll definitely keep you all in our prayers and hope for the best outcome!

Anonymous said...

Praying for Scarlett

Caryn Payne said...

My heart is aching for you today. You all have been on my mind since I heard about Scarlett. Prayers your way today. Wearing red here in Germany for little miss Scarlett today.

Anonymous said...

Sending warm comforting prayers to you and Scarlett. We pray for God to be with the doctors and Scarlett today.

Anonymous said...

My thoughts and prayers are with you all today. I was in your shoes not that long ago. My 6 year old had a brain tumor removed in November. May there be peace in your hearts today as you wait for the updates.

Anonymous said...

Continued prayers for Scarlett and both of you. I look forward to reading about her successful recovery.

Judy said...

I can't begin to imagine what you are going through. I pray that Scarlett pulls through and recovers. I also pray for comfort and peace for you as parents. God speed.

Sheila said...

I wish there were words I could say to stop the anxiety of today. Please know that I'll be praying all day for Scarlett, and you can be sure this blog will remain open on my screen all day. The whole family here is in red for Scarlett.

Kendra said...

Praying for you guys here today.

Angie said...

Praying for you today.

Anonymous said...

I have been following Scarelett's journey since hearing your story on BBC. You are all in my prayers today for a smooth surgery and a speedy recovery.

Shannon said...

Brandi and Chris you and Scarelette are in my prayers always but especially now. Stay strong and I will be posting this on FB as I do all your posts but with this one I will be asking for everyones prayers. The more the better to surround your butterfly so she can come out of this flying!!!!

Anonymous said...

Sending lots of prayer's and good vibes your way. I have been thinking about Scarett and your family all morning. Praying for a successful surgery and a speedy recovery so you can see your little girl smile again. Sending love from Vermont

Anonymous said...

I have been praying for Scarlett Grace and thinking about your family since hearing your story on BBC. I will be thinking about you all day today and praying for your beautiful baby girl. My heart goes out to you.

kaffenbergers said...

Im praying praying praying hard. I pray God gives these surgeons the power to lift this tumor far far away. This precious baby deserves to soar through this life pain free with her mommy and daddy. Praying so hard for this angel.

Heather said...

I'm praying for your family and sweet baby girl. I heard about your story from a mama on babycenter.

Anonymous said...

There are no words. Just thoughts and prayers. I wear my red proudly today! Loves and kisses Scarlett!

katy said...

Thinking about you all today and praying for you -- and your doctors. xoxoxo

Anonymous said...

Praying!

Anonymous said...

I have been following your story since you posted it on the Oct 2010 Board on Baby Center. My Thoughts and Prayers are with You and your family today. Myself, my family & friends have been praying for baby Scarlett every single day. My heart goes out to you today. Everything will be fine, With God all things are possible. God Bless You and Your Beautiful Family! I will keep checking for updates. xoxoxo Mely

Veronica said...

I have you and your beautiful Scarlett in my prayers and thoughts. A lot of Blessings and calm to the wonderful doctors and God may give them the power to cure you beloved daughter.
Sending my prayers from Belgium...

BrownFamily said...

God bless baby Scarlett today! I will be praying fervently throughout the day for God to be with the doctors, Scarlett, and you, Brandi and Chris. I cannot begin to imagine what you are all going through today and my heart aches for you. Many, many prayers.

Jessica said...

I just wanted you to know I am praying for baby Scarlett. I asked the Lord to be with y'all throughout this scary time. I pray that y'all have peace of mind and I pray for strength. I asked Him to be with the doctors as they help baby Scarlett. Ill keep you in my prayers as I pray that He blesses this family.

Anonymous said...

Please know that baby Scarlett and your entire family are in all our prayers and thoughts today, and everyday. Scarlett is a very special little blessing in your lives and now in ours while following your story. It is so hard to know what to say to you and Chris but you are both wonderful parents and Scarlett knows this too. My entire family are praying and sending positive thoughts your way all day. God bless

Rebecca (BBC june 2010) said...

STAY STRONG..{{praying}} for you,scarlett,chris and the doctors/surgeons.

Anonymous said...

We're praying for you as well since we've heard your story on BBC! LO is wearing red today in Scarlett's honor!
May God's power and grace be with your little one and her doctors today! We're praying for HIM to heal her and give her and your family the strength to overcome this difficult time in your lives. Once she is healed and recovered, may all the GLORY go to HIM who created Heaven and Earth, and may her life be a living testimony of Christ's love, power and grace in her life! Our prayer is in Jesus Christ name! AMEN!!!
From Chicago, IL

Anonymous said...

I had no idea how much you two are going through with your little one who needs a whole lot more of TLC and with the thought of having to go through a long duration of surgery. I will keep you all in my thoughts and prayers until I will know that your little Scarlett is 100% okay for sure.

Lindsey said...

You guys have been in my thoughts since I woke up this morning. I hope all goes perfectly. Much love and prayers your way.

Kristin said...

I heard about beautiful baby Scarlett on BBC today, and my heart breaks for your family. Please know that you are all in my thoughts and prayers. Sending love and hugs from Hawaii. ♥

Emily said...

Praying for you, now and always...

PLEASE do not feel obligated to update us. We love to hear how things are going and what direction to direct our prayers, but your only OBLIGATION is to pour love into that little life!

God bless!

Anonymous said...

I pray for little Scarlet and you all,she is so precious, noone should ever have to go through this.Praying and hoping.