Chapter Two, Markers

Chapter Two

The room is dark. We are alone for the first time all day. He's been napping off and on.
He says groggily from the depths of the blankets, "Mom, my feet feel funny."
"Are they asleep?"
"No, they are like the rest of me."
"Half asleep?"
"No. Half awake."
--Sam and me, March 31, 2012 7:31pm


Saturday March 31st, 2012 was our first whole day in the hospital.

I posted this photo and caption on Facebook:

This kid is seriously amazing. I could not feel more blessed to be his mother than I do today. I HATE what we're doing, I HATE what he's going through, but I could not love, cherish, or admire him more.

Sam was in the Pediatric Intensive Care Unit. The docs had given the staff the okay to move him to another unit if they needed the room for someone else. If they didn't need the room, we'd stay in the PICU until after the next surgery, tentatively scheduled for April 3rd. It was strange to be up in the air like that. It was the first of many incidences that helped me develop a deeper understanding of how hospital procedure feels from the patient side.

The funny foam discs glued to Sam's head in the picture were markers. There was another MRI scheduled for the following morning in which the markers would be used to map out the tumor location and allow the surgery team to clearly see the area(s) they were going to need to operate on. The neurosurgeon who was the specialist in pediatric brain tumors was out of town for the weekend and the surgeon who had placed the drain said he could do the craniotomy and tumor resection (the surgery to remove the tumor) if it became an emergency, but recommended we wait until the expert was there to do it. I know enough surgeons to know that when one recommends you wait for someone else to do the surgery, it's probably good advice. Surgeons don't recommend people other than themselves lightly, in my experience. Especially neurosurgeons. This is no slur on surgeons, just a comment on the confidence necessary to cut into people for a living... especially the brains of people... especially if those people are children.... That takes serious nerve and a certain ability to dissociate oneself from the emotional aspect of the situation. I couldn't do what they do, but I sure appreciate the fact that people exist who can.

I watched a craniotomy with tumor resection when I was in nursing school as part of my surgical rounds. The doc was great, explaining what he was doing and showing me anatomical landmarks (like the top of the eye-orbit from inside the patient's head). The thing that was the most remarkable to me was how the brain pulsed with the heartbeat. I distinctly remember thinking that I shouldn't have been surprised by that. I mean, OF COURSE the brain pulses-- it's incredibly vascular. But I had never seen living brain tissue before, so it hadn't occurred to me that it would look so undeniably... alive.

The image of that brain kept swimming into my mind. There it was, pulsing inside the head of an eighty-something year old man whose face was covered in blue surgical drape, effectively rendering him a work surface while the surgeon hosed out a weird meningeal tumor (that looked like and was the consistency of mint jelly). I knew that Sam's tumor was not that kind and was in a different place, but I couldn't stop thinking about it. I was scared, but also everything was so surreal that I almost couldn't identify my feelings.

Sam was feeling good, but restless. He had always been super active and was now in enforced rest mode. My folks, Jordan, and I all worked to keep him entertained and mellow. The nurses were great. There was a decent selection of movies and the fact that Sam hadn't watched much TV previously in his life came in handy as he found it riveting. His neuro checks (in which his neurological function was tested) remained great, which meant that there wasn't going to be an emergency surgery that day. Comments, love, concern, and some funny questions poured in on Facebook and via text messages. It was amazing how fast word had spread through my hospital. Of course, I had worked all through my pregnancy and Sam had been born there so he was already part of the extended community formed by my coworkers.

Also, --and this is important-- when a kid gets sick, he or she becomes everyone's kid.

There was such a sweetness amid all of the awfulness, even at the beginning when I was alternating between numb and terrified. Knowing that people were going home and hugging their kids tighter, being more patient, telling them how much they loved them, made it feel like there was a purpose to all of the bad stuff. Like at least there was something good coming of it somewhere.


My Facebook posts from March 31, 2012

9:37am
Sam had a good night. Virtually pain free (which is better than pre-hospital), eating, drinking, neuro checks are great. The docs gave the ok to transfer us out of PICU if they need the room for someone else, otherwise we'll stay here until after surgery. Thanks to everyone for the support and love. We don't need anything right now, for those of you who have asked, but I know that I will be counting on all of you to help us out after this is all over and we're back home. We have a room at the Ronald McDonald house for when the grown-ups need sleep, Sam has toys and books.

3:23pm
I can't tell you how important all of your love and support are to us. Sam's hanging in there, starting to get sad about small stuff, which tells me he's flagging a little. We're working on keeping his spirits up and keeping it mellow at the same time.


Continued in Chapter Three...