Thursday, April 14, 2011

Surgery #7

Last week, we were nearing a milestone: Scarlett almost made it to more months than surgeries.  She will be 6 months old on Saturday; she had 5 surgeries before this week.  She'll have to go a few more months to hit that milestone now.
Scarlett will have her 7th surgery tomorrow afternoon.  Her shunt is infected; officially, she has ventriculitis, or infection in the ventricles of the brain.  Yesterday's surgery brought the drainage tube out of her abdomen to see if the infection would clear that way; it hasn't.  Tomorrow's surgery will remove the shunt completely.  It will be replaced with an external ventricular drain (EVD) until her CSF is cleared of infection.  When her CSF has been sterile for 72 hours, she will get a new shunt on the other "clean" side of her brain - surgery #8.

She is still having fevers every time the Tylenol wears off.  However, she is much more alert and responsive today.  She has been getting NG feeds all day and even wanted bottles on top of that.  Good girl!

We narrowly missed the PICU; we are on the surgical unit.  It is surreal to be here, as this is where we spent most of the time during her first admission when she was first diagnosed in December.  The nurses remember us.  Even though we have been here before, we are in such a different place in our journey.  She is just as precarious, even more "sick" than she was then.  We were so scared, so in shock about the truth that had been hiding in our daughter for her first two months.  Now, we are still unsure, still scared, but we know so much more about how to help her, what to expect and how to manage whatever comes our way.

I will update on tomorrow's surgery as soon as I can.

9 comments:

Jenny said...

I've been checking your blog all day to see how she is doing. Sending prayers your way. I hope tomorrow is a brighter day for you all.

osocialcircleso said...

Scarlett will continue to be in my prayers, and I hope God gives you and Chris some peace of mind through all of this craziness. You have figured out how to mom-up during some really rough times in order to be there for your daughter, and the strength you and Chris have never ceases to amaze me. Hang in there guys, there's lots of love and prayers being sent your way <3 <3 <3

Rebecca said...

Thank you so much for the update Mom. I have been thinking of you and Scarlett non stop. Praying for you always. We love you Scarlett! <3

gelloart said...

Praying for possitive outcomes. I just know she can beat this! She is so strong. I check this blog every single day. I don't usually comment but felt compelled to today. Man I love your daughter so much and I dont even know her. My daughter was born 10/18 and this hit home with me.

Lauren said...

You guys are being so strong for your sweet little girl. I'm so sorry you are having to endure this. I'll keep Scarlett in my prayers and hope surgery 7 & 8 will be the last of it.

Haley said...

Praying for your little girl. She is a fighter! We had a short over night stay in the hospital this week with our soon to be 7 month old, so we got a small taste of what it must be like to be in and out of hospitals. Thinking of you and your family often!!!

jesshaydel said...

God Bless I am only praying for positive changes, I hope the infection goes away. I saw a prayer for you guys every night, one more day she can be with you forever. She truly is a miracle child, you have a lot of support through this time. Please know we all care and love for you.

April said...

Sending more good thoughts your way. I am glad her appetite is up. Let's hope this surgery allows the infection to clear. I am so sorry she's going through all of this. She's lucky to have you as a mommy... To know what to do and when to hand her over to others for help. <3 <3

Paula said...

All the love to the Little Princess, she'll go through it, for sure. She's such a fighter!
All the love to you too, MOM, xoxo