Chapter Six, Post Op

Opening day 16 on the advent calendar.
"What do you think is going to be in there, Sam?"
He ponders. "Hmmm.... I think maybe a little shark."
-- December 16, 2011 7:31pm



April 4, 2012

I am going to let my Facebook posts stand mostly alone for this day. We still didn't have a diagnosis-- that would come the next day. Sam was doing well and, even though the day was hard, the weight of my fear felt like it had lightened the tiniest bit. From my bed in the window nook in our new room on the 10th floor, I could watch the helicopters come and go from the rooftop landing pads. It was good to lie there in the night, when the quiet and relative stillness made everything feel scarier than it seemed in the day, and watch those metal pods whirl in and out. Each one holding a human experiencing a pivotal life event. Each one connected by a million invisible strings to the lives and hearts of countless others. It made our trials seem smaller, less personal. At the times when it was hardest to bear what Sam was going through and my inability to protect him from all harm, it helped me to hear the rotors beating and know that we weren't alone in experiencing difficulty and we weren't the worst off.

Then, as now, anything that offered perspective was good.

5:59am
Sam has had a great night. No complications, vital signs completely stable, neurological (mainly vision) deficits seems to be resolving. He has slept comfortably (I even slept for a few hours!) and has required minimal pain medication. He moves himself well in bed and wakes easily when spoken to. So far, so good.... I am amazed and thankful.

Sitting next to him in the night, listening to him breathe, I just kept marveling at how miraculous it is for any of us to be alive in the first place.

I wish that there was some way to make Sam's path be different than this. To make his medical issues just go away and for my happy, healthy kiddo to be back laughing among us. But, since that wish doesn't seem to be manifesting itself, I have chosen instead to focus on how grateful I am for the privilege of being with him on his journey, wherever it may take us.


8:05am
Assessing for memory and awareness.
Nurse Elizabeth: "Samuel, do you know where you are?"
Sam: *looks around* "Uh..."
Nurse Elizabeth: "Are you at home or at the hospital?"
Sam: "The hospital."
Nurse Elizabeth: "Do you know your name?"
Sam: "Yes."
Nurse Elizabeth: *laughs* "How old are you?"
Sam: "Four...... and a half.”


4:03pm
Just got moved out of PICU to the step-down unit! Sam's upset that there are "two TVs", I am not sure whether it's the eye issues or the morphine that's causing the double vision. He hasn't been truly awake enough for me to make a fair assessment. The surgeons are of the opinion that the neuro symptoms have improved since before surgery. That he's talking, eating, wiggling all extremities, and sassing back are enough for me!


8:56pm
I am so glad I didn't look at the MRI before surgery. Wow. I cannot believe something that huge was inside Sam's smart little head. I also looked at the post-op images. The neurosurgeon is "very pleased" with them. To my eye (admittedly untrained in reading MRIs), it looks like a giant tumor is now a ventricle again. Now to make it through the next couple of days of swelling, pain, and frustration... deep breath.... we can do this.


11:07pm
Sam had a little CSF (cerebrospinal fluid) leak around his EVD (extraventricular drain). Dr. P came to see him and had to wake him up to put in two sutures to cinch down the access point so that it would stop leaking. Two sutures in his scalp without any numbing medicine. He teared up. He said "ow ow ow". He held perfectly still. I cannot believe how brave and strong this tiny child is. I am equally awed by him and horrified that he has been through so much already that a needle through the scalp is not even worth having a good cry over. (Unless you count me crying over it once he fell back asleep.)


Next: Chapter Seven,