We waited 7.5 hours today to find out how our baby handled brain surgery. They called to give us an update every hour or so, but that’s still an insane amount of time to wait. Good news is she is such a fighter, they say it was a “beautiful” surgery and we have survived part one of our plan to heal her.
While we are happy about what we hear from the doctors and you are welcome to do a little jig with us, the hardest part has yet to come. Not sure what will turn out to be the winner —- the waiting for the seizures to come or waiting to see how her little body reacts to the second surgery – where we remove part of her brain.
One of the first things they did when she arrived in ICU is attach the leads coming out of her skull to the machine that reads her brain activity. This nearly robotic machine, complete with flatscreen and a minion-shaped camera on top, constantly stands at the ready to capture Reese’s story. (See previous post and web site about this device).
She is now hooked up with a catheter, so add that to the surgery lines and she has 4 tubes coming in/out of her body, PLUS the 34 leads attached to the grids laying on the left side of her brain.
I have had to remind myself at moments why we are doing all this. That this seemingly torturous activity we are choosing to inflict on the sweetest baby ever is in fact BETTER than the alternative. The alternative being the incessant seizures that start to cluster and get closer and closer together heading toward an unspeakable unknown. The life of never eating once seizures start because she can’t stay awake long enough between them to get any food down. A life that is completely unpredictable and dependent on severe medications.
We’ve had such an exhausting day and every time we think we are going to rest, some other question or issue comes up that we need to get addressed and they day just flies by.
Upside is we are getting the VIP treatment and we have our own private nurse. So this very pooped mommy and daddy are closing their eyes for the night. This room is warm and quiet and despite how it looks like the white tent scene from ET in here, I’m very comfortable and very trusting of the staff around us.
Thank you for your patience, your support and love, and for hanging in there with us. We haven’t taken many pictures. Remember, this is the part that Reese probably prefers we don’t document — they predict a lot of swelling in her face tomorrow so we leave you with this little face for now.
We will see what tomorrow brings. It’s not going to be pretty, or easy for Reesey, but you are all part of the team who is helping her get past this. So we thank you very much!
OK With Change 