The family has had a wild ride this week, and sadly not in the happiest of ways. On May 31, Jack had his eleventh surgery in six years- this time, to remove his tonsils and adenoids. The surgery was nice and by-the-book- nothing special, just a regular childhood procedure. Jack rested comfortably at the hospital after his surgery and was discharged the following day. Since I can’t offer him ice cream, I decided to give him unlimited access to games on the iPad during his recovery- a rare luxury!
We’ve arrived at this point six months after the trach was removed for a few reasons. The stoma has not closed on its own, and remains quite open, inviting infection. So, a plan needed to be made to close that up surgically. Jack is very eager to lose his stoma- he asks often about when he can start feeding therapy to be able to eat by mouth (or at least attempt to!) and can’t wait to swim. We’ve promised him a well-deserved day at a water slide when that stoma is all “buttoned up”!
The decision to take the tonsils out was made at the recommendation of our rockstar pulmonologist, who has noted that Jack’s tonsils are always quite swollen when we bring Jack in for sick visits. The hope is that clearing the tonsils out of the way will create more space for Jack’s airway, so that he won’t have as much need for supplemental oxygen during illness. It may also help reduce his number of infections overall.
We had hoped that this surgery could be rolled into the one to close up Jack’s trach stoma, but the ENT surgeons opted against combining the procedures, feeling that he would heal up best if we stage the operations, with the tonsils early in the summer, and the stoma later on (this August).
We took Jack home and during the first 48 hours our main challenge was convincing him to rest. He was raring to go. Fun things had been happening that he didn’t want to miss- a new kitten has joined the family, and a really cool tree fell down in the back yard that begged to be explored. But the post-surgery energy didn’t last, and soon he was experiencing low fevers and a good deal of pain despite his grandparents’ best caregiving efforts. Wednesday, the fevers spiked up to over 102. By Friday, the fevers were over 102 and he was vomiting. To the ER we went and he was swiftly diagnosed with pneumonia.
Poor guy. Even simple, by-the-book childhood procedures find a way to morph into something frightening. Soon Jack will wake up and it will be his 6th birthday, a birthday that we will spend in the hospital. Sam will arrive with his dad a few hours later, and we’ll celebrate. Looking out at a lovely view of the manicured Nemours campus, with its chemical-green lawns and elegant, rod-straight bell tower, I can’t help but think of the boys on their birthday, and how very fundamentally different they are.
A few weeks ago, I took a few morning hours to explore a Delaware wildlife preserve. It was a beautiful day and the air was filled with the intricate patterns of birdsong, a sonic Persian carpet. I took a long, slow walk in sun-dappled woods, listening to the chorus, and I came across something I love to see. It was a naked, rain-stained snag, standing tall and pocked with woodpecker holes, an imperious crone among lacy, trembling maidens. Stripped of leaves and bark, the unique, spiral grain of the tree’s underlying wood was revealed, like a yogi’s deep stretch reaching up from the base and given breath. I love to see these odd trees. The spiral-grained tree seems to articulate something important about a life well and honorably lived.
What makes a tree grow like this? Not all standing snags or moldering logs have this distinctive twist; most offer up the pinstripe-straight pattern we see daily in hardwood floors and furniture. For many years I had assumed that this was the result of the trees turning as saplings, twisting to reach for the sun like sunflowers. But the truth is not so axiomatic, and perhaps not fully understood. One of the main theories I have found is that some trees grow in a more pronounced spiral pattern when their roots are unevenly exposed to water and nutrients, forcing the organism to adopt a more consistent- and perhaps more pronounced- spiraling pattern to provide equal nourishment to all parts of the organism. (If interested, read here.)
Of my two children, Sam is one such tree. This past week’s up-and-down ride hasn’t been easy on Sam. He’s tired of being told to wait, to entertain himself, to please go find something to do, to be quiet, to get up early, to dress in the dark, to head off to school while Jack rests after a rough night. He expresses his frustration occasionally in words, but more often –as all children do- with actions that show his anger. With defiance, with elaborate, intentional dawdling, with that look of sudden fury that takes you by surprise, or with tears over absolutely nothing. Sam doesn’t always grow in the way that we expect. When he was born, six years ago today, Sam was the tiny one, his umbilical cord narrower and less vigorous than that of our much chubbier, firstborn twin. Even among trees which germinate at the same time and grow upon the same forest floor, one may form a spiral grain, and the other may not.
Spiral-grained wood isn’t as valuable to humans as the more predictable, straight-patterned type. You can’t mold it as easily into fine, functional things. Such logs don’t fetch a high price. Perhaps this is why these venerable skeletons often stand as snags in green woods, left alone by the scurrying entrepreneurs that gaze up at them. Their value can be overlooked.
Jack has been through a lot, and at six years old, he is an exceedingly compliant boy, eager to please, happy to learn, excited to go to school, unfazed by household chores. Last night, a nurse told him he’d have to be woken at 4a.m. to be weighed, and Jack cheerfully replied, “I don’t mind, I can get up any time!” He came home from school in tears when an adult wouldn’t let him help open the door for visitors. “I just love to help so much!” he wailed.
Sam, meanwhile, reveals a new mystery every day. A new stubborn whorl, a fierce enthusiasm for a subject appearing where one was not expected, a turn of phrase or twist of behavior that leaves parents scratching their heads (“Emmo and Barbanarp isn’t a thing, Mom, it’s a feeling.”) And his creativity continues to astonish. He named the new kitten (King Fishbiscuit). He can often be found making up wild Pokemon games for himself that keep him occupied running around the back yard for hours in that ancient- though perhaps vanishing- mental and bodily childhood art of play. He has tackled mastering the playground monkey bars, learning the evolved forms of Pokemon, and learning to ride a bicycle with a fervor that truly astounds. He’s very much his own little man.
There’s another theory about spiral grained trees- that spiral grain helps to create more flexibility and wind resistance, so trees that are regularly exposed to such opposing forces grow in this way in part to help them to remain resilient. And our Sam has always been resilient in his own ways.
We are looking forward to getting out of this hospital and tackling Jack and Sam’s 6th year.