Chapter Four, Do Not Unplug the Coffee Maker

"Princesses can't fly, right Mom?”
--Sam, December 12, 2011 8:45am

April 2, 2012

It's funny, looking back, to realize how few days we actually spent in the PICU. At the time, it felt like a year. Or longer. There weren't windows to look out of in the unit and day/night routines were interrupted by the constant monitor alarms, assessments, meds, and vital sign checks. Time passed in a weird way. It felt like pushing fire through cold molasses, odd bursts of melting speed mixed with the slowest slow imaginable. There were crystalized moments of brilliant, painful awareness too, hanging bright like frozen dew on a spider's web.

There was a baby (or young toddler perhaps, I was just judging age by sound) in the room next to us who spent quite a while screaming. Sam got worried, as he often does when other people are distressed, and asked me to put on the call light so he could tell the nurse to "stop giving that baby colace". Colace is a stool softener and was, at the time, the worst tasting medicine Sam could imagine. To his four year old mind, there was nothing worse they could have been doing to that kiddo than administering colace. I wish that, months later, when it was Sam's turn to be screaming in the PICU, colace was still the worst thing imaginable... but that's a story for another day.


There was a kitchen in the middle of the PICU nurses' station. I met other parents there as we were getting coffee or trying to make ourselves eat. I had always been a stress eater before, but for the first time in my life I was stressed enough to be nauseated by the thought of food. I remember standing in the kitchen one night, opening and closing the big, stainless steel refrigerator door. Knowing that I needed to eat something because I hadn't eaten for twelve hours or more, but not being able to find something that I thought I could manage. It wasn't for lack of choices, just for lack of ability to tolerate the idea of putting something in my mouth and chewing. Another mom was in there too, sipping the broth out of a cup o' noodles, but unable to actually eat the noodles. She said that had been the only thing she'd been able to get down for days. We agreed that the PICU was "the best, worst diet plan ever" and laughed together about it every time we saw each other after that.

Sign in the PICU kitchen.

Her kiddo was bigger, a young teen who had been in a tractor accident. They'd flown him and a parent in and the other parent had driven the five hours to Portland with their other kiddos and no updates of how their oldest child was doing. The cup o' noodles discussion happened the night before the surgery where the surgeon would determine if their teen athlete was going to be able to keep his foot.

She told me that her son's room had sick babies in the rooms on either side and that he'd sent a message out to his friends asking them to pray that night for the babies instead of him. He said his foot was less important than those babies getting better. Thinking about that boy and how brave and selfless he was still makes me cry.

Sam's big surgery would be the next day too.

Here are the Facebook posts from April 2, 2012...

8:37am
Some days all you can do is focus on the beauty. My child has the most wonderful smile. When he tells me a story, he uses his hands. His hugs are the best thing I can imagine. He loves dinosaurs and the hospital has found and brought him a baby and a mommy stuffed pteranodons. The big one is just "pteranodon", but the little one is named Swoop, because he flies.

10:39am
A possibility of surgery today instead of tomorrow has opened up, not because it's an emergency, but because of a change in scheduling. We should know in the next couple of hours one way or another. I met with Dr. S., the pediatric neurosurgeon. It's about 90% certain that we will need to follow up with chemo and radiation, but nothing is sure until pathology checks out a tissue sample. The odds are in Sam's favor of a good outcome and long term prognosis, but the risks are significant. Yesterday's spinal MRI was not entirely conclusive. It was deemed clear by radiology, but neurology is not 100% sure. At this point, we're looking at a 5 to 15 hour surgery followed by at least another week before discharge, plus follow up care. So what to do? You all keep up the good energy, he's done better than expected thus far. We'll play with dinosaurs and watch movies and cuddle and go for wagon rides. Sam's big complaint: he's hungry.

12:57pm
Surgery will be tomorrow. I am glad. Delaying one more day while he's feeling so good seems like a reprieve. After tomorrow, we start the post-op pain, the wait to see what his abilities are, the wait to see what complications arise, the wait to see what further treatment is needed. Today, we eat delicious food and PLAY!! Go outside and play with a kid (or like a kid) today, will you? Sam and I will join you in spirit.



I didn't post this on Facebook at the time, but here's a picture of him chilling in bed, peeling the wrapper off of some string cheese. Delish.

9:49pm
Another good day. We walked, rode in the wagon, saw the gondola cars go up and down. Sam and Grammy played Go Fish. We sang songs, hugged, laughed, and met awesome new people who are going to be our partners in getting through this.
Surgery tomorrow will most likely start in the late morning or early afternoon. I will update as I am able. Keep my boy in your thoughts, please.

Tomorrow: Chapter Five, The Surgery Party