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.