Two Trees: Jack and Sam turn 6

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”!

Jack pneumonia 2019

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. road in woods 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.  sam treeThis 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.

 

IMG_20190403_151512605Jack 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.

Sam age 6

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.

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Ode to Home Care Nurses

They are the sturdy, ready ones- unnoticed unless there is a problem.  The rebar in the concrete bridge.  The brake beneath the elevator.  Unthanked though they bear up the skyscrapers.

They are the ones we hope we will never need. The spare tire in the trunk.  The automatic activation device on the reserve parachute.  The hidden accelerometer ready to deploy the airbag.

Expected to act with the efficiency and precision of machines, yet willing to give unselfishly of their hearts to their charges.  Live long enough, and you’ll pass through their capable hands at least once or twice.  They are home care nurses, and they have an often impossible job.

This blog has often expressed the underlying tension of life with home care nursing: it is a fundamentally transactional relationship that cannot be simply professional and transactional in practice if it is to be truly effective.  Despite its many contradictions and hardships, it is our access to skilled, professional, and trustworthy nurses that has allowed John and I to sleep peacefully at night, to continue working by day, to send Jack to preschool, and to continue to work when he needed to stay home sick.  Nursing is the oil that has allowed the complex machinery of our lives to chug.  Our household has thrived due to our nurses.  Without them, all of our plans would have ground to a halt a long time ago.

It’s not just logistical; Jack’s many nurses have played major roles in helping Jack learn to self-advocate and express his needs, to become potty trained, to read, to dress himself, to gain mobility.  We have always shared our hopes and dreams for Jack with his care team, and they have always worked to help him meet his goals- work that goes far beyond the dosing, monitoring, administering of feeds, and operation of equipment that is detailed in Jack’s plan of care document.  And I daresay that our lives have been enriched too as we’ve met so many people from so many walks of life. We’ve found ourselves learning about growing up in Cameroon, Sierra Leone, Guyana, about experiences overseas in the military, about life as an American Muslim, about working two jobs to finish nursing degrees, and more.

It is hard to say goodbye to these folks.  It’s also a little scary to make the decision to lessen the safety net now that Jack is proving himself fairly hardy now that the trach is out.

On New Year’s eve, as we awaited the 10:30pm arrival of the night nurse for the last time, John and I reflected on one of the special joys of parenting- watching your children grow into their own idiosyncrasies, which (as John put it) is a bit like seeing yourself in a warped mirror.  Yet, with Jack, it is often more like looking through a kaleidoscope- we see sparkles and flecks of so many people in his turns of phrase, his gestures, his developing sense of humor.

 

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Jack: Packed up like a nurse and ready for anything.  (June, 2016)

He likes to pack things up carefully and lug a lot of bags with him.  When he was just 2, he used to hunch at the table drawing an endless pseudo-writing sentence (we posited that he was charting).  This must have been what it was like when all the adults of a small community raised a child, rather than just two parents.  Though in future years he may not remember the faces of all the people whom he has loved in his early life, these little fingerprints on his personality will always be woven into the fabric.

We saw this powerfully this week when we dropped off several crates and boxes of supplies that we no longer need to Nurses ‘N Kids.  We had not visited NNK for some time, and we were very thrilled to be able to show Jack’s progress to the team there.  Though Jack professed to remembering little about Nurses ‘N Kids, he caught a glimpse of a few favorite nurses and teachers from his earlier days and melted into their arms, a flood of memories accompanying us on the drive back home.  It was a joy to see his pride in his own accomplishments.

While John and I look forward to more freedom over our schedules in the coming weeks, we’d be remiss if we did not pause on this new year’s day to think about our nursing team and to thank them all.

So, I’d like to toast to these home care nurses, some of whom entered our lives for just a short while, and who have come and gone, and others who are with us still.  Thanks for being the guides along the path for Jack.  Thanks for being the structure beneath the ediface, the watchful eyes, the problem solvers, shields against emergency: Esther, Sherry, Jay, Emmanuel, Pat, Carol, Mohammad, Melanie, Sherri, Michelle, Haja, Barb, Flora, Nicole, Peggy, Robert, Kelly, Anita, Francesca, Michelle, Grace, Alpha, Susan, Kim, Tanya, Amanda… and perhaps a few others, too.

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Delaware School for the Deaf preschool graduation, cheered on by Ms. Esther.

Trach Life Comes To An End!

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In the obscure world of ultra-marathon swimming, those who complete a swim don’t always get a lot of perks.  Swimming the English Channel, completing the Manhattan Island Marathon, swimming the Catalina Channel (or all three) doesn’t get you a juicy book deal or a slot on Oprah- though it could happen, if you undertake a swim that has never been completed before.  Diana Nyad, in her swim from Havana, Cuba, to Key West, was one such swimmer — the only confirmed person to survive the fickle 110 mile swim.

Sitting here in the hospital after two incredible days, I find myself trying to find the right way to describe decannulation, and what that means to us, and ultra-marathons seems to fit.  It’s 4a.m., and Jack is fast asleep.  There are no alarms, though he’s hooked up to his pulse-ox.  The room is strangely uncluttered, but for the usual underfoot items: my purse, a winter jacket, a smattering of new toys.  No ventilator.  No piles of medications and strange contraptions to deliver them.  I could get used to this kind of stillness.

I think what I’m experiencing as I watch his great numbers on the monitor and listen to his unaided breathing is a bit like witnessing an ultra-marathon swimmer stride out of the water and onto the beach.  It may be a little too soon to say for sure, but I think that today Jack has climbed onto a shore which seemed unattainably distant for a long, long time.

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Bye Bye Trach!

At 12:30 on Monday, November 26, 2018, we were in the Nemours PICU, where our journey began.  There, sitting in the center of a crowd (several doctors, nurses, and Mom, Dad, Nana and Da) Jack removed his trach himself and, with a beaming, crooked smile, tossed it on the bed beside him- 1,727 days after it was first placed.  It’s been his friend and lifeline for a long time- and his signature too- he worries about his friends not recognizing him when he goes to school without it.  It’s also been a millstone tied about our family’s neck for those 56 months and 21 days.  Such a tiny little thing of plastic and silicone, weighing in at just over an ounce, but with it has come a kind of forced march of sleepless nights, tracheitis infections, missed school and work, nursing troubles, difficult calls to insurance companies, durable medical equipment deliveries and errors, lengthy discussions with teachers, school nurses, case managers, and transportation.

 

Watching Jack pluck it out so matter of factly, and then, with a twinkle in his eye, ask every person who enters his room to “look- what’s different!?” feels like an ending to a marathon.

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Jack getting prepped for a sleep study, July 2018

Of course, we can’t stretch this analogy, this image of a triumphant finish, too far- it easily warps and breaks.  I must be clear that this is not a narrative about a miraculous cure.  In preparation for this step, Jack underwent many tests this summer and fall, including a salivagram which investigated signs of aspiration.

 

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EEG in 2018.  No problem.

He has failed all swallow studies (there have been three) to date.  The salivagram study showed much the same.  He has only a partial, not truly functional, swallow, and still aspirates some of his secretions to his lungs.  The trach was placed to help him to protect his lungs from this threat of aspiration and subsequent pneumonias. So what has changed?  Why take this step now?

The answer isn’t straightforward.  In essence, nothing has changed.  However, compared to many trach kids, Jack has a strong record of avoiding pneumonia, so he seemsto be able to protect his airway.  As he has grown stronger, developing physically, Jack has needed his ventilator less and less, and it’s now been several months since he was hooked up to it- another reason that a trach is not as essential as it once was.

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Pneumonia, June 2018.  Very tired mom.

For Jack, the balance of factors had simply shifted and the trach was causing more problems (infections and reduced independence) than it was really solving.  So, for all of our exhillaration at leaving the trach and all of its logistics behind, this isn’t really an ending as it is the start of a new kind of expedition.  The first trial of his readiness came in the hospital as we waited to see if Jack could maintain his oxygen during sleep without the aid of his trach, a feat which he has passed with flying colors.  The next trial will be whether or not his first cold after this decannulation will set him back with a serious pneumonia.

 

One thing that I have learned is that medicine is not so much a clear equation or list of checkboxes as it is a careful reading of evidence, a navigation around dangers based upon expertise and lived experience, a series of team decisions.

In her historic swim, Diana Nyad faced dangers of dehydration, hypothermia, jellyfish, sharks, and unpredictable seas.  She also had to manage incredible monotony and sensory deprivation during the 53 hour experience, and when she emerged from the water, people saw a lone hero defying the odds.  But something worth knowing about ultra marathon swimmers is that they are never swimming alone.  Perhaps they swim in carefully managed events with plenty of staff on hand.  Or, perhaps they are accompanied by a single partner in a kayak who paddles alongside, ready to intervene and support.  In Nyad’s case, she swam behind a specially designed catamaran carrying a 35 person support crew.  In addition to her managers and handlers, that crew included navigators to keep her on a straight course, boat operators, weather routers, medical staff, and shark experts.  I imagine her team watching her progress, reviewing data, discussing, correcting course, changing plans here and there, keeping the goal in mind and working together to bring their knowledge of the swimmer, the seas, and the risks to bear in the task of supporting this unique person in her unique journey.

While under observation, Jack has enjoyed visits from a parade of people who have supported him along the way.  Sam arrived with a present specially picked for his brother and a “two thumbs up” card.  My parents stayed and played lots of go fish to pass the time while we talked about the hours they’ve spent driving to and from NH to help us. Jen, once our PICU social worker, sat with us for a long while, remembering and celebrating.  Jana, child life specialist who helped us reintroduce the twins to one another after their three-month separation met us in the new child life clubhouse while Jack played. Bob, the RT who first told us “It’s Jack’s world, we’re all just living in it!” came by with huge hugs and smiles. Abby was there, the PICU nurse who calmed Jack during some of his worst pre-op nights with a magical “chest pat”.  Kim and Mary, poked their heads in, PICU doctors who had seen him through his post-op complications.  Jack’s pediatrician (and super mom of another amazing medical kiddo) Melissa stayed for a long chat. Even Dr. Piatt stopped by, looking a little older and more distinguished, but still sporting his characteristic bow tie.  We texted teachers from the School for the Deaf, nurses, coworkers and family and friends near and far.  It’s a huge crew that has followed and supported this kid.  Survival, after all, is something that we do together.

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While we were finishing out our second day’s stay, the pulmonology team asked if I would be willing to meet with the parents of a 2-week old little girl just a few doors down from us.  The otherwise healthy, full term baby with exquisite brushstrokes of red-gold hair had been trached almost at birth.  Her shell-shocked parents had done their first trach change that very day.  “But how are we going to do this?” they asked.  “How will we ever go back to work?  How will we transport her? How will we carry all of this  equipment?”  We talked for a long time, and I watched them swirl the bittersweet new vocabulary of this unexpected ingredient in their daughter’s life around their mouths, resolute and terrified.  “You can do this,” I told them.  “You’re not alone. Take it one day at a time, and start by building her team.”

 

As my own little marathon swimmer stands on this unfamiliar coastline, a small bandage on his neck and a huge support team cheering in the background, I look forward to introducing him to the campouts and waterslides previously out of reach but which he will get to experience on this new shore.  As for me, I can’t wait for the simple pleasure of going to bed when I am tired, rather than waiting for a nurse to arrive.  I look forward- with some trepidation, but a lot of hope- to disembarking from this hulking catamaran in favor of lighter vessel as we push off behind Jack as he swims toward new horizons.

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Main Stream: First day of Kindergarten

Their father tackled the purchasing and packing of school supplies with all the care he has learned managing medical equipment.  Lunches have been carefully packed, the jar of formula and Duocal no less lovingly prepared than the neatly sliced peanut butter sandwich.  After five years, the boys are finally going to head off to school together.

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Sam, lying in a ball on the floor this morning, confessed that he felt nervous about attending kindergarten at a big school.  As Jack unhooked himself matter-of-factly from his AirVo and reached for a fresh HME, he told his brother not to worry, he’d help him learn how to go to a big school.  I’m with Sam on this one- I feel nervous, too.  I worry about the educational machine swallowing them whole.  I fear that Sam will be encouraged to be unremarkable.  I fear that Jack will be treated as someone who needs to be handled like glass.

For a long time, we fought for a specialized environment for Jack, and Delaware School for the Deaf was the perfect place for him.  At our first meeting last week with his new teachers, the educational diagnostician, and school nurse, we could feel the apprehension in this new cast of characters.  Jack and Sam’s bright, newly constructed  public school has an excellent reputation, but this team didn’t enter teaching because they were called to the challenges and delicate dance of managing special needs children.  Now the fight shifts and we are working to ensure that Jack is treated just like every other kid in the room (despite the nurse that will trundle along behind him like a shadow throughout his school days). It is an odd, off-balance feeling.

This morning, crouched down at the school threshold, I delivered them to their new world with the last fierce squeeze of early childhood- one arm around each little boy.  “Learn lots, have fun, be respectful.”  I straightened, now a lone figure on the sidewalk rather than the hulking, bunched shape of three that I had been for a time.  I watched their heads join the rivulets of black, brown, and blond crowns bobbing and weaving through the doors. Small, bright pebbles in the sand which runs through one’s fingers.  I was reminded of these lines, which I murmur like a prayer:

“Whatever he needs, he has or doesn’t have by now

whatever the world is going to do to him

it has started to do. With a pencil and two

Hardy Boys and a peanut butter sandwich and

grapes he is on his way, there is nothing

more we can do for him. Whatever is

stored in his heart, he can use, now.”

From: “The summer-camp bus pulls away from the curb”  by Sharon Olds

I’m so proud of these two.  They’ve both seen love in abundance, and rules and chores, too.  They both have been asked from the start to contribute to the good of the whole, whether that means foregoing the ice cream to avoid hospitalization, or whether that means getting dropped off at a friend’s house at short notice due to a sibling’s need to be seen urgently at the hospital.  These two have ridden roller coasters together- literal and figurative.  They’ve weathered storms and they bear the marks, some seen and some unseen.  Jack bears the “Survivor Signs” of his scars and differences.  Sam bears a certain unyielding suspicion that he might not be getting as much attention or resources as he deserves.  Both of these are the realities that they must carry.  They are young, but they are no different from everyone else, now- and yet they are so vitally, uniquely their own.

jack and sam 2018

Who will be the one who picks up these pebbles from the sand- so undifferentiated now within this strange, new, mainstream, and holds each of them up this way, that way, and marvels at the facets and tiny, rich worlds within each, polishing and coaxing them to brightness?

There is nothing more we can do for them except trust in them and believe in them.  They have each other.  And tucked away within each is all the strength and love that they will need.

Bounce Back Day 2018: The Greenhouse

It has been four years since Jack’s surgery!

To celebrate Bounce Back Day and our yearly ritual of renewal, we took a trip to Longwood Gardens.  Under the oppressive February sky, our van drove past fallow fields. Starlings lifted as one like the blackened ghosts of leaves from ice gray grass, puddles like mercury briefly capturing their reflections.  Muted yellow spikes of witch hazel and freckles of lime colored moss seemed the only natural color for miles and miles. Then we entered the conservatory, humid as a winter barn, a riot of color.  A thick sensation assailed me like a midsummer scent of decay for a moment, and my hand went to my nose, confused, until my eyes fell on the ruddy lilies crowding beside me by the thousands.  Instantly, the perception of the scent changed into something pleasant.  No, Meg, not danger.  Lilies.  Remember?

The boys hurried to the children’s garden, run-walking so as to follow the letter of parental law with occasional backward glances, and I followed.  I wondered at the strangeness of it- that I can take this glass house of wonders, carved out of soggy, threatening February for granted.  I considered aloud what it takes to keep a place like this going.  The boys, however, were in its thrall and all that they saw glittered with the slick light of newness.  Water vapor that they can blow aside or fluff with their hands in intricate, strange patterns above the hidden pool beneath the children’s garden stairs.  The way that slate tiles turn dark when painted with water begs for a full investigation.  The flowers come in their favorite colors, as if made just for them.  We parents stand with them in paradise, and yet also outside of it- and we try to convince them of its stability, despite the other reality just outside its glass walls.  Despite the web of complex social contracts and systems, trusts and man-made innovations that chug and grind beneath the pretty walkways, all of it required to make this paradise thrive.

Medically, Jack’s past year can be characterized as a lengthy plateau.  We haven’t seen any really traumatic setbacks this year- no hospitalizations, no major illnesses.  Jack has experienced plenty of concerning rashes, fevers, some respiratory viruses and lengthy stomach bugs that have left us poised for action, racing around to rule out serious problems (is that rash a normal kid thing, or MRSA?  Is this week-long stomach problem just a virus or a sign of shunt failure?) While the woods we dwell in have been warm and calm this year, we are jumpy within them.  Perhaps we’ll always have the feeling that the shape we see out of the corner of our eyes is some rare and hulking danger.  We no longer trust that which we cannot see and instantly classify.

Jack continues to wear his speaking valve or HME during the day, but has not fully weaned off of the ventilator, despite our efforts.  He still requires oxygen and the vent frequently at night though he continues to use the AirVo many nights a week with success.  Jack had his fourth swallow study this September.  Because we observed that he was making a gulping sound when we asked him to swallow, and because he has increasingly demanded food and water at mealtimes over the past year, we had some hope that he was figuring out how to get food down, yet the study again showed no improvement.  While there is some hope that Jack may be able to have his trach removed despite a continued inability to swallow, this is a complicated mix of factors, and we remain uncertain of the path ahead.  Jack also had a new hearing test, which showed normal hearing in his left ear, and no discernible hearing in his right.  He was such a trooper at the test- which has now been repeated many times.  He was an expert at it.

If Jack is our hothouse flower, his teachers and nurses are the gardeners.  Nursing remains imperative to our family, and yet is a constant source of managerial stress.  We continue to rely extensively on home nursing to facilitate Jack’s ability to attend school, and to allow us to work during his frequent fevers and illnesses.  Delaware Medicaid is the vehicle which provides access to nursing, and so we have watched the national political landscape with regard to Medicaid with increasing concern over the past year.  We have a great team of nurses, many of whom are like family, though we did recently have to remove a nurse who worked with us for over a year from the case due to some flatly negligent behavior.  Jack has become aware of the relationship between his medical needs and this great staff of people.  He frets sometimes about what it will mean if his trach is removed one day.  Will all of these people suddenly vanish from his life?

Jack now attends a hybrid school program- heading to Christiana Early Childhood Center in the morning, where he enjoys a diverse and boisterous classroom of peers in a traditional preschool program, and Delaware School for the Deaf in the afternoons, where he gets speech and physical therapies and one-on-one attention from his teachers.  It’s the perfect environment for him right now, and his development is astonishing.  I have been especially amazed by his growing ability to count and recognize patterns, to write and sight-read simple words, and his verbal skills continue develop above grade level, and he loves word play.  Despite the effort that it takes to sustain this environment, our fragile boy is thriving in every way possible.  He even started gymnastics this year, and we couldn’t be prouder of him for working hard to strengthen his body and push his limits.  And, I think he’s proud of himself, too.

Sam doesn’t enjoy all of the benefits of this greenhouse- and he has not been able to attend preschool and reap its benefits as I would have wished.  I do find myself worrying about his kindergarten preparedness at times when I see the ease with which Jack can identify letter sounds and puzzle through simple mathematics concepts.  Yet, Sam is and has always been less a hothouse flower, and more like the forsythia.  Plant it anywhere and it grows, a little wildly and in unexpected directions, but no less dazzling and full of sunshine when its time is right.  And, being “out there in the world”, Sam has a much more sophisticated sense of managing interactions with peers than Jack- his shyness vanishes when others the same age are present.  Sam remains intensely interested in science topics- where things are in the world, how rocks are made, how weather happens, what makes a car go?  And he is creative!  He loves to play the “What if” game.  A recent back and forth looked like this:

IMG_20171018_190409380Sam: “What if our house was made of paper?”
Me: “Hmm… Then I guess it would fall apart as soon as it rained”
Sam: “Not if the rain was also made of paper!”

Sam’s art is one of his great loves and his skill has continued to evolve to the point that the “machines” he creates have become so fascinating that we decided to commission him to create the art for our newly-painted hallway.  I believe Sam has all of the ingredients to take off in Kindergarten, and in life, just as his brother does.

And for our family, I think we are proud of what we have built to keep Jack thriving, though it seems scarcely sustainable at times.  We will never stop living outside of the woods, outside of fear, but maybe that is just the human condition.

 

All this was new,
Was after-Eden.
No longer could
They sleep beneath
The trees, trusting
Branches not to break.

It was a habitation
They had to make:
Four walls and a roof-
A place to live,
A world inside the world.

–Excerpted from “To Build” by Gregory Orr

Spring Break Stomach Bug

Well, Jack is down for the count with a nasty stomach virus.  It’s hard to know whether the cold he’s had for a few days set him off, or whether its simply a GI bug.  But he really is struggling.  We spent the day yesterday at home together and the poor kid couldn’t do much other than sit on the couch in a zone, holding a bucket while I tried to find the best way to hydrate him.  It’s tricky with a G-tube.  He usually eats 3x a day by taking a dose of 255mls of water over about 40 minutes.  I slowed it down to 100mls an hour of mostly pedialite, but he still couldn’t handle it and we were getting nervous  about dehydration.  By the end of the day, the doctors at AI had sent over a prescription for some anti-nausea medication, and Jack was finally able to keep down some tylenol to keep his fevers down.  Poor kid fell asleep at 4:30pm!

The whole day he kept asking me for small cups of water that he could drink.  (We give him about 1ml of water in the bottom of a shot glass.)  Jack doesn’t really take water by mouth, though he likes to wet his tongue with it, and he may get a little bit down.  He was so insistant about having water by mouth that I finally asked him why.  And he told me “when you’re sick, you need to drink lots of water so that it flushes the germs out of your body.”  Somebody had been listening to advice we had given to Sam on his last sick day, I think.  Though I told him that he needs to “drink” by taking his “belly food”, it didn’t really seem to cut it.

It’s hard to make the call to stay home when you know you have a nurse who has been scheduled to come and look after your kid.  And 70% of the time, Jack’s illnesses are short-lived fevers that don’t amount to anything, just  a result of the colonizations in his trach area-and we do keep him home with a nurse on those frequent occasions.  But I can say that the way Jack was looking yesterday and today was enough to convince me that this kiddo deserved to have a parent at home with him.  I’d like for Jack to have memories of being sick and looked after by his parents… not only when a hospitalization is involved.  And I’ll admit that I feel pretty gross outsourcing the care of my sick kid to a nurse even on days when he’s only a little bit ill.  But then, you’re cancelling your scheduled nurse, who then doesn’t get paid….  Sometimes it seems like a no-win.

I’ve just returned from a conference which gave me the opportunity to see the incredibly innovative work that my peers at other institutions are doing, and I confess that such experiences inevitably turn up the volume of the “never enough” refrain of the working mother that is always there, playing like a broken record in my head.  It’s a full, wonderful life, and I’m lucky to have work that I find challenging (and even fulfilling most of the time) and a spectacular family.  I hope someday to be able to say that there’s enough time and attention to go around.

But in the meantime, I’ll do my best to find some balance.

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2017: Bounce Back Day!

The brain.  What an amazing, intimate and yet alien mass it is.  Sometimes I find myself thinking about the structures of the brain, the vertical and horizontal weave of networked cells: a microscopic, synaptic forest that makes us who we are.  I think about Jack’s brain, the intense little machine that it has become, and its limitations.  I think about my own memories, represented somewhere within hidden networks of dendrites and axons, some memory pathways so overgrown that they cannot be recovered until they spring to life uninvited through some unrecognized association.  You stumble onto one strand, and find an entire forgotten tapestry.  For me, in February, associations crowd thickly around like little tripwires.  The half-thawed ground, the crackling overhead rivers of starlings on their morning and evening commutes have taken on a dark meaning.  The bare trees seem paused, waiting for the blow.  When the holidays end, when the semester begins, there is a part of me that starts looking over my shoulder.  Sometimes I realize right away that it is getting close to anniversary time.  Sometimes it takes time for me to understand why I feel so strangely off-balance.

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Rituals are powerful, and we have a ritual in our house that is like a spell that wards off some of those swampy, post-traumatic ruminations.  It is time for Bounce Back Day.  Each year on February 27 we talk as a family about Jack’s surgery, with a little more detail each time.  We look at pictures and we talk about the experience.  Then we go do something fun and focus on how glad we are to be together.  This year, I thought Jack could pick what we might do.  He thought about it, and made some suggestions:

  • We can do some Star Wars and Paw Patrol puzzles.
  • We can take all the dirty sheets off the beds and put them in the laundry.
  • We can all go to the forest and throw rocks in the river.

img_1125Ah, the mind of a three year old- both ridiculous and profound.  Just look at that list: he wanted to spend time as a family tackling challenges, keeping the household tidy and running, and playing in the woods.  I think this three year old child just captured my life’s philosophy.

It’s been a while since readers of this blog had some video content, so I’ve curated a few family videos here.  Hope you like them!

As you can see, in the last six months, Jack has become ever more communicative and loves to spin wild stories.  He rarely uses sign language now, preferring instead to use his voice.  He loves to read, often stopping us to ask if we can explain what this or that word means.  He enjoys making up words as well.  For a long time everyone was a silly “baroush”, “hatihot”, or “baroonjay”.  He cracks himself up with these verbal creations.  He can spend a truly impressive amount of time on a puzzle- from 30-piece puzzles with large pieces to mini puzzles of 6 pieces each smaller than a dime.  He remains outgoing and open, and will say hello to anyone.   (The last time we were at AI for a brief check up, he stopped a custodian in the hallway to offer him a high five.  I must say, by the surprised look of delight on the gentleman’s face, I think Jack made his day.)

img_3351Sam remains our happy, sensitive soul.  Right now his great loves are art and playing any game that involves running around with a foam sword.  As you can see in the video, he led me on an adventure under the kitchen table a few weeks ago with his foam sword to fight an annundoolie-flavored dragon (I didn’t know that dragons had flavors!)  I think one of my favorite things about Sam is his dancing.  It’s getting zanier by the day.  He insists on footie pajamas every night and dancing time is apparently right before bed, so the pajamas undoubtedly add to the zany effect of his wild dance moves.

These two bring so much sunlight into our world.  It dances through the tangled bracken of our complicated life, illuminating all the unexpected beauty beneath.  Three years after we sat in surgery wondering what would be left of our son and of our family at the end of it, we are all walking through the forest and throwing rocks in the river together.  It’s awesome.

Medically, we have had an easy year free of hospitalizations.  Our first!  Jack’s had illnesses on and off but no seizures, no reemerging hydrocephalus or such sudden pitfalls.  We have even had some positive developments.  First, Jack had a sleep study this fall that he passed with flying colors.  The study showed that his brain is functioning normally in sleep and there is no central apnea as a result of his brain injury that would require a ventilator for life.  Second, we had our definitive, final MRI showing that his brain continues to grow normally, and his tumor is very much gone.  We are now well past the period for re-growth, so we can say that it’s not going to come back.  We will only be followed with MRIs every 2 years rather than every 6 months to check on the status of his hydrocephalus.  Such a blessing… those words don’t even come close to expressing how incredible it feels to be releived of that burden.  Third, we are weaning him off of his ventilator, (first by removing the forced breaths, and then removing the positive pressure that the vent provided, and now he is on another machine (the Airvo) at night.  This is a very simple machine which gently blows heated, moist air to an area just in front of his trach.   (You can see it in the picture below.) When he is healthy, the work of breathing is all his, and he does well.  When he’s got a cold (which is still somewhat frequent) or a fever (also still quite frequent), his 02 levels drop and he does require the vent.  Amusingly, he doesn’t like to have the Airvo on as he falls asleep- preferring the ventilator.  Some kids like teddy bears, some kids like hard plastic tubing, I guess…?

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We’ve faced continual trouble finding nursing coverage, so lately we’ve had to cover 1-2 night shifts per week ourselves.  As I was writing this post, I learned of another nurse leaving the agency, which will mean that we no longer have Sunday, Monday, Wednesday, and some Friday coverage. Even on nights when Jack is healthy, covering the night shift ourselves is a trial.  We either must sleep on his floor in short spurts while waking to check the Airvo, his food pump or his oxygen monitor, or stay awake.  Each month that Jack does a little better off of the ventilator gives us hope that someday we can let go of constant nursing coverage, but we still desperately need it right now.  Jack is fortunate to have a great team of nurses at his side.  The little man has developed quite a temper, and our nurses do a great job of not taking too much of his nonsense, while giving him real affection and great care.

This May, we expect to have a great visit with pulmonology.  We hope to get him off the vent and discuss what further diagnostics might be needed to reassess his swallow in light of the fact that he has had so few pneumonias this past year (and is now participating in all meals- tasting everything but also clearly ingesting some of what he tastes.)  I think the future for this little boy is very bright indeed.

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Thanks as always for keeping Jack and Sam in your thoughts!