Something touched me with this book and I had to have it this weekend. For Reese someday. Or maybe for me… Been thinking about Reese’s surgery a lot. How can we not? Good news (if ever there was any) we have a date!
Things feel very official now. We have a surgery plan and we know what everyone has to do. Now we just have to hope Reese holds up her part.
and yes, I have to pause and revel in one side note — Our doctor called us “super parents”. Said she has to always being her A game when it’s us. I realize I am bordering on psycho mommy many times but I have to say if there is any upside to all our agonizing is that if an experienced neurologist thinks we are SUPER then I guess we have done our homework and probably can feel good about our decision. As good as can be anyway, until reality sets in. On to the details!
Starting mid-Feb, for 6 weeks
We will start stepping down off her steroids, the one medicine that has protected her from seizures. Ideally she will stay healthy and stable and we will get to control the process of going into the hospital, etc. Without the protection from the steroids, any cold or sickness could trigger the seizures, which just means we are heading into the operating room a little earlier.
First of April
If we are all clear still after 6 weeks, we will get admitted and begin the first phase of surgery, Intra-operative EEG. Don’t look it up if you have a weak heart or stomach. She will have over 100 electrodes implanted directly on her brain, yes her skull is cut open. We then wait.
Hopefully it isn’t too long from that point and we have accurately predicted when she will have a seizure. The EEG will capture the data the doctors need to pinpoint where and what to remove.
This is MAJOR surgery. No bones about that. They told us she will require lots of blood, then we close her up and see if it worked. They will completely suture her up, we’ll sit 4-5 more days and then go home.
It feels surreal and I know we will go through so many emotions in the next 2 months. So we thank you now for your patience with our no doubt insane behavior at times.
I think that is why once again, Dr. Seuss has figured out an easy way to say how we feel. And I can’t believe I never knew this one before this week. Seems my timing to the book store was perfect. Glad D and I went Monday. Here’s hoping I never have to share it with my sweet girl.