June 29, 2012 was my surgery date, so now it’s official… I am one month past the day I had my hemispherectomy.
Originally, Mom and Dad, along with the doctors, therapists and all of my supporters believed I would still be in the hospital at this point. Possibly another two weeks from now would conclude my stay, then on to the long recovery at home.
It was discussed that I would likely be laying on the sofa for another month or two after my return home. I would have no energy. Would be lethargic and tire easily. I would have no other noticeable side effects – short of the possibility of hydrocephalus (I had to look that up and it still makes no sense).
Luckily, much of that has been wrong.
You may recall, my stay in The Children’s Hospital of Aurora lasted for 10 days. That was 10 LONG days to me, short days to everyone else. I began talking and moving within 1.5 hours of being ‘closed up’, though my doc didn’t believe Mom and Dad when they told him. It was, after all, unusually rare. My first words post surgery were, “Did I do a good job?”
After I was kicked out of the PICU (pediatric ICU) in less than 24 hours, my recovery continued on the 6th floor, a place I am familiar with, where I overheard nurses say that many kids with a hemispherectomy or a “less major” brain surgery take 2 weeks to re-learn how to swallow. Many of my fellow child warriors would have to use a feeding tube to get nutrients (Mom said I should use that word) until they re-learned this. I was fortunate that it only took me the time to wake on the 6th floor and be offered some water.
Another two months, the nurses said, it would take my fellow child warriors to learn the simplest movements of their affected side. Within a few days, I was able to bear enough weight on my legs to walk.
At home, while I have found myself longing for time in my “Napping Ninja” spot of choice, I also found that the lack of “other” side effects was not true for me. I ran a fever, have had an extreme sensitivity to light and the feeling of wind (or even fans) on my skin just plain hurt. Though it may have been symptoms of aseptic meningitis, I was able to fight it back. The fever is gone. My sensitivity to light is just about back to the level it was before (I was sensitive at times before), and sometimes I can tolerate smaller doses of wind.
My energy level is better! While I’m not 100%, I’m no longer napping every day. My Mom and Dad say the best part is that I’m sleeping through the night on most nights. With the return of my IVIG, my Mom and Dad are excited to see what’s in store for me next.
So, those are my thoughts this month later…. what are yours?