The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard. Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.
Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups. Medically, there’s some positive news to share on several fronts. Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent. With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months. This continued weaning from ventilator support is a great sign. We’d love to say good bye to the incessant night-time beeping of that machine! Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night. This is likely to happen this summer. There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.
Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence. They indicated that we should have an MRI in November. If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”. Another amazing piece of great news!
Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!” (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)
I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there. I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this. For any working mom, identities are always in conflict. When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities. I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind). As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.
Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good. Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self. Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them. That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished. I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.
I find myself mulling over this lately. Is there a way to meld my professional life with this other identity? Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?
… I have some ideas. But that will have to wait until the next blog post!
It’s the blizzard of the century here in Delaware, and I enjoyed observing and taking part in the flurry of activity and conversation that preceded the big storm this week. While no one looks forward to the inevitable dig-out process, I think most adults secretly relish the little dose of novelty and uncertainty that a big storm injects into the week. There was lots of talk of bringing in fuel, food, buttoning up the house, and speculation about whether or not the power would hold.
I turned 10 in 1991, meaning that my peers and I were some of the last kids to have a very analog childhood and some of the first to have a very digital adolescence. There was a lot of imaginintive play and ustructured time outside when I was a kid, fortunate as I was to live in an area with lots of woods, fields, and a complete lack of threat. Safe and sound in our little corner of the US, my best friend, Denise, and I invented frontiers. A deserted island was a favorite, the wilds of Alaska, and the various muddy, lush, or desert planets of the Star Wars universe were our mental playgrounds. Something about these landscapes seemed to magnify the vulnerability that we felt in childhood while allowing us to explore our pluck and resourcefulness in the face of challenges. (Yes, the hurricane blew our shelter over, but we’ll be okay, because I can talk to WOLVES.)
In college, my small, tight-knit group of best friends (one of whom is now my husband) and I had a favorite thought-game that we would play over drinks or on long hikes. If this society that college was purportedly preparing us to enter should suddenly shudder and collapse, what would we do? We discussed our various skills and personal characteristics, the level to which we could cooperate and remain resilient. I even went so far as to write up a spreadsheet of prime locations that would provide us with a stable climate, wood, water, and food sources. We still speak of “the compound” with a certain mix of self-mockery and wistful nostalgia.
Last weekend, John and I eagerly watched The Martian, a fictional survival story about an astronaut inadvertently left on Mars by his team- a plot guranteed to interest the Eagle Scout and wannabe-frontier-girl combo that we are. Here’s one of the final lines from the film:
“At some point, everything’s gonna go south on you and you’re going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That’s all it is. You just begin. You do the math. You solve one problem and you solve the next one, and then the next. And If you solve enough problems, you get to come home.” (My emphasis.)
I actually felt my stomach sour when I heard this, and it colored my whole experience of the film. Don’t get me wrong, I do love grit, and it does take plenty of that to get through serious crises, but I’ve come to a completely different understanding of survival these days.
Two years ago, we became a vulnerable family. I’m composing this at 3a.m as I sit beside Jack’s ventilator. The blizzard means that we don’t have a nurse, so we’ll cover the night shift ourselves for a few days. John spent quite a lot of time wiring in circuits for the generator to ensure that we can keep the ventilator running through a power outage, and I touched base with our nursing company and reviewed our backup plans in the event of a long-term power outage. I checked our prescriptions to make sure we wouldn’t be caught without anything. I touched base with our pharmacist, who knows us by name. Before we were ever discharged from the hospital, I put our name on several emergency lists. The power company knows about us. The fire department. The state.
If something were to go wrong, I mean really wrong, (war, infrastructure decay, pandemic, economic collapse, etc.) if we were faced with a frontier, we’d be screwed. In his book, Do No Harm: Stories of Life, Death, and Brain Surgery, British neurosurgeon Henry Marsh describes the case of a child that he treated in Ukraine for a brain tumor. After the surgery, unresolved hydrocephalus resulted in her needing a VP shunt, just as Jack does. Despite the skill of this reknowned surgeon, despite a successful recovery, this child died just two years later. Lacking fast access to a good hospital, shunt failure was likely the cause of her death.
There is something deeply wrong with the sentiment described by Matt Damon’s character in The Martian, that if you (individually) just have enough brains, pluck, and grit, you can survive anything. This is an odd statement to make, since the character in the film seems to conveniently forget the multi-billion, multinational campaign that the space program back home had to mount to make his survival possible.
There’s a huge community that has borne each of us up over time, whether you are an able person, a healthy person, a genius, an average just-getting-by, middle of the bell curve, hard working person, or a person with physical, mental, or health challenges. I think these dominant frontier narratives are very dangerous when they conveniently sweep our vulnerable populations under the rug, and, perhaps even more so, when they forget that vulnerability is at the heart of their own story.
I still love blizzards, and I do get excited at the thought of a snowed-in weekend, but becoming a vulnerable family has changed the way that I experience such things. It’s made me understand that survival is not an individual pursuit. It’s something we do together.
Hello, all! Sorry it has been a while. Much has happened this fall, and there is much news to share (how could there not be, with two fast-growing kiddos in the house!?) I have taken up a new role at work, and thus have found that shifting sands and new projects of a kind that I have little prior experience with have taken up most of my waking hours and focus over the last few months. That landscape only promises to intensify, but I am committed to maintaining my writing here- please be patient as updates may be sporadic over the next few months!
Jack had an MRI of the brain in early November, and I am pleased to report that it was clear. There is no longer a great, gaping ‘cyst’ where the tumor had been, the ventricles are of a moderate (no longer swollen) size, and most crucially, there is no sign of a re-emergent tumor. I was surprised, thrilled, and a little terrified when Dr. Walter informed us that there is no further need for regular MRIs. He feels that given Jack’s tumor type, the greatest danger for reemergence is likely behind us. It will be a strange thing not to get those nerve-wracking tests on a regular basis… and it will be hard to feel secure without being able to tell myself that a recent scan showed nothing.
Further shunt failures are likely for Jack, so there will certainly be MRIs in the future– just not regular ones. I think this ushers in a whole new phase, and is really great news.
We had a more sobering visit just a week later with the neurologist who is now following Jack as a result of the April seizure. Back when the seizure had taken place, an EEG (a test used to detect abnormalities related to electrical activity of the brain) was done. At that time, we were told that there were some abnormalities with the scan- nothing serious. I assumed then that this was likely because of the electrical storm that had been happening in his brain just hours before. In November, we took Jack for his follow up EEG, and found that- while there was no sign of epilepsy (great news)- the scan did not show a perfect, untouched brain that is functioning exactly as any toddler’s might. There are some impacts that are consistent with the kind of damage that his brain suffered. I’m being vague here- largely because this is the first time that I have hit upon a part of Jack’s story that I feel I need to treat with some sensitivity… because I don’t know what Jack’s own feeling will be about sharing this information some day. Our brains- their limits and their capacities- make us who we are. This is a fact that I’ve struggled with my whole life; I know how important it is for one to make up her own defining narrative on the subject — so really, it’s up to Jack to decide when and how to tell this part of the tale.
We know that there will be some differences in the way that Jack’s brain works. But we don’t really know what that will look like. What I can say is that what I see at home is amazing progress- jumping, running, a sense of humor and curiosity, a temper, empathy, burgeoning communication abilities, sociability, and interests that are all his own. I don’t see him really having trouble making his own way in the world- though a parent never stops grieving when their child’s way is harder than they wanted it to be. Our neurology visit gave us a reminder of this hard truth, but it is just one small point of data in a sea of progress, and there’s not much that we can do with that data right now.
Jack has also let us know that he prefers to use his voice over his signs. He’s figured out how to speak over his trach, so he is pretty vocal even without the valve. One day recently, he got off of the ambulance at the end of the day and we noticed he wasn’t using his voice- he was signing just as if he’d never stopped. It turned out that his cuff had been slightly over-inflated, cutting off the airflow to his voicebox. He was nonplussed. Just switched right back to his signs until we figured out what was up. He and I also picked our signs back up at a recent, rather noisy event, when we couldn’t hear one another well. It was gratifying to see him using all the tools at his disposal. I’m really grateful that we invested the time and energy in sign language for Jack. When he vocalizes, it is often very hard to understand him– particularly when he tries to tell you a lot all at once– but he can often get his point across fairly well.
Here’s a recent sample of Jack talking (with his valve on) so you can get a sense of how far he has come this semester! For those that may not be able to understand him or to access the audio, here‘s a quick transcript. (Sorry I didn’t have time to caption). He was pretty hysterical over the word “cheat”, and loved saying it over and over.
Sam is ever more chatty. Each day I am amazed at how quickly the gaps in his knowledge about the world are filling in. (We had a half hour long, rather loop-like discussion of the weather recently.) Here’s a recent Sam-rendition of “Santa Claus is Coming To Town”, with transcript here. I think you can see just how hilarious it is to live with this inquisitive, unafraid spirit who is going to pitch in, have fun, and say his bit… whether or not the details are fully fleshed out. Wish I had a touch of his confidence! More to come soon on Sam and the holiday break. I also hope to share some of my thoughts on the connections that I’m coming to appreciate between patient advocacy and my own line of work in information literacy in coming posts. I’m also hoping to write more about work-life balance in the coming year.
Thanks for reading, and for bearing with me through the last long lag!
First of all, Jack and Sam are fine. We’ve had an eventful time since Jack’s shunt surgery, which I will detail in a moment, but first, I want to write about something that’s been on my mind for a few months.
A mother who is involved in an online community of parents whose children have tracheotomies recently wrote about what it means when your child is never going to be “out of the woods.” I want to talk a bit about that metaphor here, because it has come to have a lot of power for me in the last few weeks.
Have you ever spent time alone in the woods? (The actual, non-metaphorical woods, I mean.) Everything in a natural landscape seems to be precisely tuned to the correct volume for the senses. You can really take things in when you are outside. Trees alert you to wind, light, recent rain. Growing things make you note the passage of time in a way that you simply don’t while commuting, shopping, sitting at a desk. You can watch the air condense and form mist in the evening. You can actually watch it breathe over the earth. Abstracts become concrete in this way. Time, air, growth.
Have you ever spent time alone in the woods at night? Now, nothing is concrete. You hold the flashlight’s inconstant doughnut of light in front of you, filled with the inexplicable sense that something that has always been very close at hand has now swung its malignant attention upon you. The person who serenely watched the movements of clouds over the lake hours before and made existential comments is now scarcely a person at all. Just a small, small thing picking an unsteady path through the trees, acutely aware of how fragile her existence is. She is part of the woods, not sitting above it somewhere, as vulnerable as the twig that cracks underfoot as she steps off of the path’s hard clay.
Being a medically fragile family is just like this. When there are no fevers, no aspirations, no neurological symptoms, you experience a clarity and serenity that’s hard to express. Your goals, once abstract, are concrete and stay in sharp focus. You are not distracted by things that don’t matter. The slings and arrows of the day fall away easily. Your children’s accomplishments seem amplified when it was never a given that they’d accomplish them. You feel almost heroic with this energy and are humbled by the thousand acts of grace within your community that you are uniquely privileged to witness firsthand.
And then… night sets in with the phone call in the midst of a busy work day. Some new symptom, scan, or emergency arises, and the lights are out. Now, you feel the enormity of the uncertainty of your situation, and your powerlessness in the face of it. All the perspective you thought you had in the light is utterly gone in these times. What can you do? You wait the terror out and hope for the daylight to come back.
We’re back visiting the nighttime woods with Jack.
Monday, we got a call from Jack’s daycare indicating that Jack had a “neurological episode”. He was just about to have speech therapy, when he put his chin down on his shoulder, became non-responsive, and his eyes diverted to the right, twitching repeatedly, just as they did during the first days after tumor resection. It lasted two minutes, and it took a full 15 minutes afterwards to bring him back to himself. I’d say seizure is one of the “big three” that we fear the most in Jack’s case… tumor reemergence being #1, severe aspiration and/or loss of oxygen being #2, and seizures being #3. What makes this episode so frightening is that its something we’ve never seen before. What does this new development mean? After a day in the ER, a rapid MRI scan, an EEG and a follow up visit with Dr. Piatt, we are no closer to understanding than we were before.
I was grateful that Dr. Walter called to assure us that this doesn’t mean that the tumor is reemerging, and most likely the recent shunt surgery is to blame. There are no guarantees that Jack won’t develop a seizure disorder- after all, his brain has had many assaults. Indeed, Dr. Piatt concurred that Jack has enough risk factors for seizure that long-term medication sounds like a wise course. This new medication is worrisome to us, as we don’t fully understand its side effects or implications. Our appointment with yet another team of doctors in the Neurology unit at the end of the month should provide more information.
So Jack now has a new medication, and we have a new threat to monitor, but life goes on as before. Monday night, after a day which included a seizure, being restrained for an MRI and being forcibly hooked up to electrodes for a lengthy EEG, he ran around in his diaper laughing his silent laugh and chasing his brother.
It was one year ago this week that our lives were irreversably changed. I have no way of knowing what February will come to mean to Jack, in the narrative that he will one day stitch together for himself. To me, it has deep traumatic resonances that have not subsided. I sometimes find myself confronted with very intrusive, vivid memories of the PICU when I least expect it. Yet also, the experience and the full-sight-and-sound memories of it are an odd source of strength. What a tremendous perspective shift the whole experience has been. You learn not to sweat the little stuff when you can smile and say that despite an uncertain future, I still have a family of four.
One year after he lay dazed in PICU, clinging to life, Jack grins toothily as he picks out his proud, wobbly steps into our arms.
What could possibly be better? Jack is walking.
I am sitting at Jack’s bedside in a dark room strewn with toys as he naps. He’s had a rough few days of pesky fevers, persistent headaches that scared the crud out of me, and now things have settled into a familiar pattern of a bad virus. It’s not too bad- just some extra meds and breathing treatments throughout the day, and extra vigilance on our part. The missed work is the hardest part, and I hope we will get through this one without a hospitalization.
When Jack has headaches that are not caused by ear infections, I panic. I pace around a lot and chew on my fingers. We are very good at keeping the “what ifs” under stern lock and key in this house, but when I see Jack crying and clutching at his head, all the bad scenarios crowd around me, and I remember that the swamp is very near.
Oncology assures me that a reemergence of the tumor is not likely. The greater fear is shunt infection or failure. Thankfully, Jack’s bad headache seems to have coincided with what was probably a viral fever, nothing more. If we see it again, we’ll be heading to Dr. Piatt for a consultation, I think.
Perhaps one reason that my fears seem so amped up this time is that Jack has been doing so incredibly well.
There are two very big pieces of news to report. First, Jack is beginning to communicate! He can sign “please” now, and “wash”. It is surprisingly difficult to teach a child who is not rewarded with food how to communicate. Turns out, the bath and playing with water are favorites, so perhaps that is why “wash” has had resonance with him. I’ve been staying up late here and there trying to learn signs. I’m now signing “thank you”, “mommy”, “daddy”, “bedtime”, “cup”, “cat” and “play” pretty consistently to him, in the hopes that if done enough he will pick it up. His receptive language has improved as well. If you ask him if he wants a bath, he will drop what he is doing and head for the tub. He is pointing to things with more consistency.
Jack watches everything, but he often seems withdrawn. We wonder, is that just who Jack is- more of an introvert? Is he cognitively different from us? What is he thinking? It was as if John, Sam, and I were on an island, a solid place made of names, with rules and patterns that made things knowable. Jack seemed adrift on an ocean that we couldn’t bridge. His arm-waving was unintelligible to us; our constant chatter a barrier to him. When Jack first “got it” and began signing consistently for things that he needed help with or wanted, it felt like we had thrown a line into outer space and hooked the moon. A chasm had been crossed, and perhaps the moon was not as far as we had always believed it to be. Perhaps it had been sitting at the dinner table with us all along.
Sam is Jack’s great ambassador to the world of language; the more Sam can pick up of some basic signs, perhaps Jack will pick those things up too, as it is clear that Jack wants to copy everything that his brother can do. Sam had been saying and simultaneously signing “please” for about three weeks before Jack joined in. He also signs “more” and (less consistenly) “baby” and “eat”. Sam’s own language acquisition has hit the explosion phase. He is saying new words every day now. The newest item yesterday was “bus”. It’s exciting to see Sam begin to construct partial sentences such as “Daddy go?” or “Bye to Daddy” and to follow simple commands. However, the command thing doesn’t always work out the way we plan…. the other day, he was carrying around a hunk of banana that he clearly was not going to eat. We asked him to go throw it away. He obediently toddled into the kitchen and returned empty handed. Only two days later did we discover the banana neatly placed in the pantry on top of some canned goods. Yuck!
The second exciting piece of news is that Jack is begining to walk! He’s not interested in the truck push-toy that Sam used during this phase. What he likes is the musical pusher that plays tunes when walked around the house. His gait is his own- he walks by lifting his whole leg from the hip in a very stiff-legged motion, stabilizing, and lifting the other. He hasn’t worked out the knees yet. The leg on the right is also turned outwards a bit, the foot pointing out rather than straight ahead. My feeling is, that’s great! PT and OT can work on the particulars with him- the motivation to walk is what matters most to us, and he’s got it.
So excited to see where we go next!