It was our first ever family vacation last week! We packed the minivan full of gear (the vent, the AirVo, the food pump, boxes of formula, boxes of suction catheters, boxes of inhalation-grade water, oxygen, emergency supplies) and the usual family vacation items (little boy backpacks full of toys and coloring books, suitcases, water shoes and toothbrushes and sunscreen), and bounced up to Connecticut to see one family, then to NH to see the other.
It was a needed break. July has been a hard month. We had to put our wonderful cat down after 13 years of friendship. This was the boys’ first experience of death, and they are still processing it. Jack especially has been asking where Buca is each morning around the time that we would have been giving him his medicine. We also had to say another kind of goodbye. Since Jack’s discharge, he’s been looked after during the day when not in school by a daycare facility which provides nursing care and therapy services. These are the nurses who have risen early to get on an ambulance to ride to our house and deliver Jack back to the facility in time to catch the bus to DSD. This is the team that spotted Jack’s emerging hydrocephalus symptoms when he needed a shunt revision. This is the team who saw the onset of Jack’s seizure, kept him safe through it, and kept careful notes of its characteristics. And this is the therapy team who worked tirelessly for Jack, pushing him and pushing us to work harder at getting him mobile, accessing language, learning to socialize. This team has become like family.
Yet, in the last 5 months, most of the nursing staff there turned over quite suddenly. We learned of at least one occasion in which a nurse who had formerly worked there full time stopped in to see him and found him asleep without his vent, an oxygen monitor or a nurse- a dangerous situation. There were occasional mistakes- nothing serious, but then Jack’s behavior surrounding basic care began to change. He expressed fear and distress whenever we needed to clean his trach or g-tube site. It’s been an uphill battle to get Jack back to a level of comfort with basic care since then.
We decided to remove Jack from the facility this month. It was a terribly difficult decision. It means that Jack is missing a month of therapy with an extraordinary team. It means an abrupt goodbye to teachers and nurses who have always advocated for him, who truly love Jack as if he were their own. And it means saying goodbye to Urgent Ambulance, an amazing team of people who have been bringing Jack to and from daycare for us each day. These folks took time out of their own day to buy Jack a balloon on his birthday. They play music, flash the lights for him… they do a lot to make him feel special. Part of me will miss the daily rituals surrounding the comings and goings of the ambulance. Knowing I have to hurry home to intercept the ambulance has kept me from working late most nights, and I’ll miss hearing Sam shout “The AAAM-Bu-LAAANCE!!” when that white shape pulls into the driveway.
I’ve listed quantifiable, objective reasons for our course of action here, which may lead you to think that this decision was entirely rational, measured, and clean. What is harder to detail is the way that our feelings play into making such a decision. According to the ubiquitous Meyers-Briggs Type Indicator, I score fairly high on the intuition scale. When I was in high school, this classification seemed to affirm that I had some mysterious, little understood type of access to the world that others did not have- that my gut feelings were more likely to be right than others’. (Maybe I was even a little psychic?) Maybe the world contained mysterious forces, and I was one of the few who could interpret them (always correctly, of course). Thankfully, 20 years of making mistakes has more than tempered this view. Now I see this aspect of my mind quite like that teenaged daughter. Full of promise and able to cut through a lot of nonsense with the occasional flash of insight… but also generally lacking impulse control and not to be trusted with the car keys.
I’ve been thinking a lot about when to “Go with your gut” when making a decision about education or care. How should the ethereal feelings and inscrutable conclusions that form rapidly in the intuitive mind be allowed to influence decisions when you’re caring for someone who is medically complex? When do you stop weighing the logical pros and cons and run with your intuition?
Sometimes, the information received from the intuitive mind is as obvious and incontrovertible as steam rising from a morning cup of tea- a knowing that is as fundamental and taken for granted as the laws of physics- just an overlooked piece of the picture. Yet more often, I find that unpacking my own intuitive judgments is more like watching a wisp of cloud in a clear blue sky. You can be aware of its presence, see the movement of the vapor, make a study of its tendrils curling in on themselves, you may even be able to define its edges. But determining its true size, its relevance, is impossible because your mind cannot perceive the depth of the sky.
How do you recognize the errors in intuitive judgments and refocus when incorrect? I knew that the new staff at the daycare was making mistakes, and these mistakes were filed away in a log book of sorts in my mind, adding up over time to an unsavory picture. Yet, my mind is not similarly keeping track of all the times that things went right, so a true accounting is not really possible. Like the depth of the sky, we lack an understanding of our own minds, and this leads so often to poor “gut” conclusions.
In the end, however, Jack’s behavioral changes are ultimately what forced the decision, despite my uncertainty about whether “trusting my gut” was really the right course. Jack just didn’t seem to get out of it what he once had. This is the hidden strength of intuition. It works poorly when trying to make a decision on something you know only a little about, like (for me) what nursing training standards should look like in a pediatric patient extended care (PPEC) center. Yet, it works very well indeed in spheres in which you are an expert. So, while you’ll never hear me utter the phrase “mother knows best” (because I don’t), I do spend an enormous amount of time with Jack and Sam. I watch their faces as they react to the large and small aspects of their life, I observe their bodies in anger, at rest, at play. At least right now I can say that I know my son pretty well, and I trust my gut when it tells me that he’s not okay.
My own rule of thumb for making a gut decision vs a solely logical one adheres pretty closely to this- do I know a lot about the subject I’m making a gut call on? No? Then I better do research and talk to some experts and mentors. Do I know a great deal? In that case, I should listen closely to my intuition.
In August, a lot will have changed. We’ll miss our furry companion, we’ll miss our old friends at daycare, and our friends on the ambulance. But we’re looking forward to the exciting things that are ahead. Jack will soon be picked up and dropped off by a school bus for his all-day program at Delaware School for the Deaf, which will solve our major transportation problems and meet our desire for Jack to have a rich social learning environment. Medicaid picked up the cost of additional home care nursing hours, and Sam’s daycare, Learning Lane, didn’t hesitate when we asked if they could provide care for Jack during the day for the month of August, if a nurse is with him. The boys’ first day at daycare together was today, and they did well.
PS: If you are interested in reading about the strengths and limitations of the intuitive mind, I highly recommend reading Daniel Kahneman’s Thinking Fast and Slow.
On June 1: I led a team of librarians in providing a workshop for faculty at our Summer Faculty Institute on campus. I had the opportunity to invite the scholar, writer, technologist and all-around great person Dr. Tom Mackey to provide the keynote for the information literacy track that the library sponsored. Because our campus is undergoing a general education revision, a discussion of metaliteracy and its impact on information literacy was timely. This is the first time that I have seen our library put forward such a cohesive effort to push library instruction out there, and I was proud to have been part of it. Some great conversations emerged that I hope will help the UD Library move forward.
On June 2: I took Jack to Christiana Hospital for a swallow study (the first since 2014), to learn if he had regained any function now that he has had electronic stimulation therapy during feeding trials for a few years. He was frightened by the large machinery (what three year old wouldn’t be) but we both tried to be brave. He, as the machines whirred and clicked, and I too while listening to the radiologist’s subtle narration: “Come on, Jack- Oh, no… No, Jack, oh n-n-no…!” Jack’s feeding therapist, Debbie, who has worked tirelessly with him on feeding, was visibly crushed by the lack of progress shown. I was not. While she may have seen advances in chewing, coughing to clear, etc., we still see plenty of aspiration at home, so this was no surprise. We’ve seen so many miracles. Alas, this one still eludes us for now.
On June 3: John and I joined a team of 15 educators, nurses, therapists, and administrators for Jack’s first IEP meeting. An IEP (Individualized Education Plan) is a very important document for special needs children who will require extra educational supports; the meeting represented an important transition for Jack. Because he is now three, he will no longer receive school and therapy services through Child Development Watch, (“CDW“) which is Delaware’s early intervention program. This IEP meeting would determine which therapy services would be provided to Jack and how frequently, and what school placement will provide the “least restrictive environment” for him. In the many meetings which led up to the IEP meeting, I was amazed to find myself feeling overwhelmed and inadequate despite my M.Ed and professional background. I found the back and forth between school district representatives, caseworkers, teachers and therapists dizzying. I encountered what it must feel like to be in a bad information literacy class, with a librarian who speaks in his own acronyms, his own language- but doesn’t take the time to gauge the learner’s needs and adjust his pace. Thus, it took a lot of work in the six months prior to the June 3rd meeting -a lot of reading, a lot of discussion with family educators and deaf education advocates- for me to gain a functional understanding of the issues and to build a sense of what questions I needed to ask, what to leave unsaid. Thanks to these partners and a great deal of careful groundwork, the meeting (which had shown every sign of being somewhat contentious) went smoothly, and we got Jack the placement at Delaware School for the Deaf that we had so hoped for in the coming year. We’re happy to report that he will attend school all day, 5 days a week, in a sign-supported speech learning environment starting this September.
In my last post, I wrote of trying to find ways for the “mother-and-advocate” self to be at peace with “educator-and-career-lady” self, and I think I’ve begun to hit on it. The Association of College and Research Libraries provides a Framework for Information Literacy which guides librarians’ thinking and ? teaching around information skills. One of the frames, entitled “Research as Inquiry” outlines several knowledge practices: actions regularly taken by those who are becoming more agile at working with information. I think this frame is especially helpful for parents of medically complex children, so I decided to map these practices, along with lessons learned and strategies that I have picked up in my own journey as a mother (who also happens to be a librarian) of a medically complex child. The piece is strictly practical in nature and will appear in the August edition of Complexchild.org. While I recognize that putting this work forth in an online magazine might not make it as valuable to those reading my CV as a peer reviewed journal article might, I think that the opportunity to help others as they struggle through the real challenges of negotiating information ecosystems on behalf of their own children is worth it.
I also was recently able to take over the liaison role to our campus’ Disability Studies minor. I volunteered our family to pair up with a team of students in the program doing a capstone project. They met with us to learn about Jack, talk about the services and policies that impact his life, and created a video to show Jack’s story. Their final project featuring our family is here. While the video probably gives us more credit than we deserve, this interaction with the students closed the loop for me. By sharing my experience as a mother of a medically complex child, discussing strategies, hopes and concerns with the students, we helped make the theoretical practical for them. By seeing the product of their work and observing their information gathering and creation process, my work as a librarian was greatly enriched. I thought about what it truly means to be a student tasked with creating new knowledge products which have a life outside of the classroom in a networked world. I drew greatly from this experience as I thought about how best to structure our summer faculty institute workshop for faculty. In essence: the students connected the practical to the theoretical for me.
It’s an exciting new avenue of exploration for me, and I hope to be able to develop it further by taking on new professional challenges, and by increasing my engagement with local disability advocacy groups.
Next post: A deeper dive into the educational and care arrangements for fall, and thoughts about the role of intuition when making care decisions.
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!
I’d like to write about an aspect of our life that I have not written much about since Jack was in CORP over a year ago: what it takes to keep the household going while keeping Jack in the rich environments that he so desperately needs to thrive mentally, physically, and emotionally.
We could not keep ourselves going without the help of a large staff of nurses and case coordinators from our home nursing company, Bayada. Nurses come to the house each night so that John and I can sleep. They monitor Jack and his ventilator throughout the night, silencing alarms so that we can rest, and addressing his needs. Some help us to keep our syringes and trachs sterilized, our equipment organized, and our meds up-to-date- things we usually do ourselves. We used to have nursing on Saturdays and Sundays during the day. Now, due to recent changes in Medicaid coverage, we have a single Sunday day shift per week. This lets us take our eyes off of Jack long enough for John and I to get all the errands of the week under control. It also facilitates our ability to get Jack out of the house on fun trips and outings. Bayada nurses also take Jack to school at the Delaware School for the Deaf.
Nursing is absolutely essential to our lives and it dictates the ebb and flow of our days. We turn in when the nurse arrives, and we must wake when the nurse’s shift is over. When we experience call-outs and lack of coverage–which happens at least a few times per month– we are up all night and can barely function at work. Nursing makes our life possible. It’s also one of the tougher things to get used to.
When we learned that Jack would have a trach and a g-tube, we never guessed that his transportation needs would be the most fraught aspect of our new life. A certified caregiver must remain at Jack’s side when he is transported, ready to switch out a trach or provide emergency care, getting Jack to and from daycare, to and from school, and to and from his numerous doctor’s appointments.
Here’s what has to happen in order for Jack to go to daycare: An ambulance picks a nurse up from Nurses N Kids at 6:30a.m. and travels to our house. We give report, load Jack and his gear up, and Jack travels to NNK for the day. Last fall, we found ourselves caught in the middle of a contractual disagreement between Nurses N Kids and the transportation company that they contract with. The transportation company stopped sending a separate van to pick up Jack each morning. We missed work due to late arrival times and early return trips home. Jack was en route for well over an hour (which he does not tolerate well- he grows congested and has trouble keeping his O2 levels up). With a friend-of-a-friend’s help, we were able to appeal to the state Medicaid office to secure a separate contract for Jack that resulted in our current, ambulance-every-day arrangement. Without reliable daily transportation for Jack, we would not be able to work full time.
When Jack’s needs grow, so too does complexity. After a great experience with Delaware School for the Deaf last Spring, we secured funding for additional nursing coverage this summer to allow Jack to attend school 3 days a week. Here’s what has to happen to transport Jack to school:
In July, we had secured a letter of medical necessity and made the insurance request for extra nursing hours to make his additional school day possible. What we did not account for, however, was that the school district would shift his school bus pickup times to 7:20…. our whole arrangement fell apart. It took a week of phone calls to try (to no avail) to get a later bus pickup time for Jack, to shift our Bayada nurse’s schedule, ask NNK to send a nurse in by 6:00a.m. (and many of these nurses have significant commutes to work!) to register the change with the statewide agency that controls medical transportation, LogistiCare, as well as with our ambulance company, while figuring out lesser logistics such as how Jack’s meds will be administered with so little time for the trade-off between NNK nurses and Bayada. Jack had his first week of school this week and sure enough… the zero margin of error that we are dealing with meant that when the ambulance was ten minutes late to NNK, Jack missed the bus. It’s a mess and I’m not sure how we’ll work it out.
Meds and Equipment
John and I have established a division of labor in which he inventories and orders our medical equipment supplies, and I calendar for and keep track of the 7 medications that Jack requires. Some of the meds are compounded, meaning extra time must be allowed for refills. Some must be refrigerated. Some last only ten days before expiring and must be mixed at home. Some, like the new anti-seizure med, must be given at the same time to avoid the possibility of breakthrough seizures. And one medication, Tobramycin, an inhaled antibiotic that Jack periodically needs to fight lung infections, could cost us over $10,000 per refill unless we tread very, very carefully with insurance. I can’t begin to tell you here just how many phone calls have been made due to that one medication.
Because of safety regulations, Bayada and NNK nurses can’t administer pre-drawn medications, so I can’t just send Jack off with single doses ready to go. This means we must make sure we have school bottles that are tracked and stored properly.
John checks the equipment such as our oxygen canisters, disposables such as Jack’s HMEs and suction catheters, schedules deliveries, and has worked out storage systems for all the supplies that work for us and for our nurses. He watches the nurses’ notes meticulously for any supplies that must be sent in to daycare. He also schedules the periodic visits from respiratory therapists who must check the functioning of Jack’s ventilators (he has two- one that travels with him everywhere he goes, and another that stays at the bedside).
Let me tell you, when you have to look at the clock and calculate how long it is until the next med, how flexible the timing is on that med, whether you need to pre-pack food and a food pump, whether Jack might fall asleep and require a ventilator, it makes it mighty hard to take a spontaneous drive, a trip to the park, or anything else even slightly spontaneous.
What it all means
I think you get the picture. Even during the healthy, simple times, there’s a lot going on, and many balls in the air. I was motivated to write this post NOT because I am fed up or angry or looking to vent (though I certainly get that way sometimes) but because we try very hard to stay positive– and I think that leads me to write in a way that doesn’t always give the appropriate nod to the costs of Jack’s progress.
Folks who know us are often shocked to learn that we have nurses in our home every day, having thought that this was something needed just in the acute period, when Jack was first brought home. “When will all that end?” we often hear.
The answer to that question, of course, is not up to any of us to answer. In a pulmonary visit last week, Dr. Chidekel was measured, logical and mostly optimistic. As we move into respiratory season once again, our main goal must be to stay the course and keep Jack healthy. Once next spring rolls around, when Jack turns 3 and is all the stronger (God willing) we can start talking about possibilities for weaning the vent support down. Now, however, Jack needs the boost of good, vent-supported rest to keep his mind and body strong. As long as Jack needs the vent, he will need the trach to facilitate its use. Signs that he is growing stronger are good- he now tolerates and uncuffed trach most of the day and wears his speaking valve for 2-5 hour sprints.
But what about the swallowing?
Jack’s eStim sessions have not changed the fact that he is aspirating- we can see food come out of his trach– we know he is not swallowing. Because he yearns to eat food with us at meals, we have begun to explain to him and to Sam that we love Jack but can’t give him food because it is dangerous to him. We explain that it is because he cannot swallow, and that maybe someday, (maybe) if he works very hard with his therapists, maybe he can learn. It’s hard to tell a two-year-old who is crying with the deep, sincere tears of one who knows perfectly well that it’s not fair that no, it isn’t fair but it is just the way it is. Dr. Chidekel seems to put his hope in Jack’s mind- that Jack is smart, motivated, and willful, and that this combination may help him to overcome the swallowing difficulty in time.
I cannot say that I understand how this will ever happen– swallowing is something that you can do consciously, of course, but it must also happen unconsciously. And I cannot say that i understand how a child that cannot swallow will ever be free of a trach. And as long as Jack has a trach, all the logistics that I have outlined today will remain, as far as I am able to see. But we are a hopeful bunch.