When I closed my laptop after I shared last night's post, I just sat on my little pull-out bed and, well... sat. What had we done? Who were we kidding, when we thought this was a good idea? My child is quite literally going through hell, FOR. WHAT?!
And then he seized again.
You know what was left for me to do? I pushed the seizure button, told God "I give up.", and went to sleep.
I looked at the clock. It was 4:12am. Renn had to use the restroom... Wow. I got three solid hours of sleep! Thank you, Father.
As I helped cover Renn back up, I noticed an odd something on his headdress. For a second, I thought an article of clothing had attached itself somehow. Then I realized... It was red.
Every expletive went through my mind at once as I tried to look calm for my child. "Mommy, my head kind of hurts."
Oh no, no, no, no, NO!
I frantically looked for the stupid nurse call button, but thankfully one walked in because he heard
The Neurosurgeon on call (not the nicest guy in the universe) came in, looked at Renn's incision for LITERALLY (yes, I counted) four seconds. Then he said that it looked good, and it was no big deal.
Now, I knew that leakage was normal. I was a smart girl and I did tons of research before we said yes to this. However, a WEEK after the surgery? And mere hours after a large, crazy seizure that caused my kiddo to... No. This guy was not allowed to just say that it was no big deal. However, a nurse whom I've connected with came in and talked me down... She felt badly for the way I'd been "handled" and she said she was just as nervous.
After she left, I sat in the dark and once again I found myself calling out to God. This time, all I wanted to know was that He was there. I wanted to know that He was in our room, and that His little boy was perfectly safe. Then, Renn's heart rate went low and steady... I heard God say, "I'm here." Almost instantly, I fell asleep...
As the day went on, the hubs and Eli came in, and we told everyone about all the events that Renn had had. Dr. Incredi-Surgeon came in and let us know that we were on the schedule for Friday, but that he was going to try to get it moved to Wednesday. It was all dependent upon what Dr. Genius and his team had decided to do. Soon, I got a call from one of the Neurologists. She basically told me that we were a go for resection. A GO!!! But they wanted to meet with Rick and myself to discuss options.
We waited. And waited. And waited.
Renn had his first Physical Therapy session to help with his neck situation... As you can see, he has A LOT coming out of his skull. All of those wires and that big black bag weigh roughly seven to ten pounds. Renn only weighs forty-seven pounds. He felt better after it was over, and quickly found himself tired enough to take a nap.
Within the hour, he had two seizures in his sleep. Rick and I looked at each other... It's over.
Soon after we
I can guarantee that this will be the last post where there won't be an answer about what to do next for our Jedi. While that is thrilling, it's also terrifying. But God is so present... I realize that I threw a gnarly temper tantrum in my fury and fear. However, God grabbed ahold of me last night and reassured me. He's here. He's with Renn. He's with the doctors. Each decision will lead Renn to be the MAN he is to become. Who are we to stand in the way? Once again, I go to sleep filled with both innate fear of the unknown and a great sense of calm. No one could ever understand that unless they've been through a life-altering situation. And I get that now.
"Answer me when I call to you, my righteous God. Give me relief from my distress; have mercy on me and hear my prayer."
(Thank you, Rebecca, for sending me this verse today)