Recovery Day 4

Recovery Day 4 - Social media has been a fabulous life line for me before and after my surgery. In the last ten years, I've become friends with so many individuals and families who face hydrocephalus every day with such courage and determination! Their knowledge and strength have been leading me forward in this recovery process.

I always knew having a shunt again was a possibility, but I can't believe how sad I am that I need one again! I had hoped my ETV would manage my hydrocephalus for life! And if it had failed, it would simply be a matter of reopening it. No big deal. Unfortunately, I knew that wasn't my luck from the second I woke up after surgery. I seriously processed those first few minutes after waking up from the general anesthesia like this: "I'm awake! Awesome!! Did they use stitches or staples? Please be stitches. Staples hurt a ton when they have to pull them out. And holy crap!!! I have a shunt again. Noooooo!!!" and then I started ugly crying which set off all sorts of alarms and whistles on the machines attached to me and got the attention of all the nurses. And guess what?!! The crying hurt my head SO much that I've been trying not to cry ever since which is really difficult to do, by the way, because my emotions are alllll over the place right now.

Isn't that just so strange? And that's why I'm struggling at the moment... Shunts fail. Allll the time. I had three fail in twelve months the first year I was diagnosed. And now that I have a shunt again, in our hydrocephalus world, we know it's just a matter of time before it stops working and I have to get a new one. But that's as far as I take my thought process before I remind myself to let go and let God lead and guide me. He knows the plan for me and it's up to me to do whatever it is He asks of me. And that's when I plead for more strength, courage, and determination and then get off my knees and do whatever it is that needs to be done. And at this point in the recovery process, all that I need to do is sleep, sleep, and sleep some more, hug and love my kidlets and Glen. We've got this. #hydrocephalus #failedETV#itsashuntlife #letgoletGod #brainsurgery

So I'm trying to move forward while still taking everything day by day, sometimes hour by hour. And I'm leaning heavily on the experience of my friends who have exponentially more brain surgeries under their belts than I do. Five surgeries is, oddly enough, a really low number in our hydrocephalus community. Isn't that weirdo? If someone who has hydrocephalus for whatever reason tells me that they've only had five or six brain surgeries in 20 years, then I'm going to be astonished and give them an excited, lucky for you high five! And if someone who's had hydrocephalus for whatever reason tells me that they've had 124 brain surgeries in 20 years, then I'm going to be less astonished and ask how many shunts they've gone through in those 100+ surgeries.

In other news... My aunt came for a visit today and our three-year-old told her, "My mommy's head has a hole in it." Out of the mouths of babes...

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