The quest to get my autistic, nonverbal, pathologically sensory defensive child’s diseased teeth taken care of so he can be out of mind-reeling pain and safe from dangerous infection? Have we discussed this? It's been one clusterfuck after another and I can't remember where I left off. I’ll skip over the whole debacle back in the fall when we drove him an hour to Valhalla, NY, to their special needs dental clinic associated with Westchester Children’s Hospital.. Yes, we got our 6 foot 5, 310 lb gentle giant to fight past his monstrous fear of all places unfamiliar, especially medical, and sit in front of their dentist without trying to leave through the nearest window. Then we got said dentist to sign off on the fact that, yep, this child needs dentistry under general anesthesia and he seems to have a painful infection, so let’s get to it. Got him all set up for scheduling, paperwork and paperwork and paperwork, did a load of pre-op, then got told the surgeon in charge has decided to no longer take insurance for his services. Apparently, this particular practitioner is only available for special needs families who own yachts. But that’s in the past, we’ll let that go. Better for my blood pressure. In the meantime, grab a cup of coffee and put your feet up. And if you don’t like cussing, maybe skip the rest of this.
The special needs clinic at Rose F. Kennedy Children’s Hospital in the Bronx (associated with Montefiore and Albert Einstein Hospitals) was our next stop, because a few weeks ago, a very nasty, golf-ball size abscess erupted near Calvin’s lower left canine tooth, and there was plenty of fever to boot. The staff there were great, they were even able to peek into his mouth a little. And he sat voluntarily in the chair under all those lights!!!!! Holy smokes!!! But turns out they can't treat him at their facility because of his size. I don't entirely understand, but it's something about the safety of his breathing being ok while they do the procedure in their setting. They do IV sedation, and for a guy who's maybe 180-200 lbs and average height, what they do there is safe and fine. But Calvin is way bigger than that, and his neck is big, and he won't be easy and cooperative, so that place is a no go because they worry about his breathing. At some point I want to understand better what the anesthesia difference is, but it’s been too overwhelming to grasp so far. I guess it's not a traditional OR setting and that’s why it won’t be safe enough. And of course that’s all we needed to hear. We need it to be safe enough, full stop. So what’s next?
The fine professionals at Rose F. Kennedy referred us to another Montefiore dental clinic in the Bronx, promised we’d hear from this other office within a day, and indeed we did. They set us up to come in within just a few days after our first trip to the Bronx.. The surgeon I spoke to told us to make sure he was fasting, because the plan was to get the problem tooth/teeth dealt with, then put him on the 6 month wait list for a whole dental workup where they do a full cleaning and scaling and anything else that needed to be done—which is what we would have been able to get done in Valhalla if that whole deal hadn’t gone South like Sherman.
So this past Friday, we got to the clinic on Kossuth Ave in the Bronx. This neighborhood is like Montifiore Central. Moses Hospital, Albert Einstein, the children’s hospitals, tons of medical offices, all Montefiore. So we get ourselves into a parking structure that's fairly close, traffic and getting around was predictably nightmarish, but fine, whatever, and we gave our boy a nice little walk around the Bronx (he did great, although it was fucking freezing), then finally got him up to the office for his appointment. He waited on a line outside the office with us like a champ, not a peep out of him, no trying to escape. The staff makes sure to confirm he's been fasting (they should have been able to tell by the way he was looking at everybody like he was hallucinating them as a hamburger or hot dog like in the Bugs Bunny desert island cartoon), They got us into an examining room, he sat in the chair, nice as you please. A couple of oral surgeons do a great job tag teaming, each gently poking around in there and peering with flashlights and they can get the general idea that the molar right behind the left canine on the bottom is a problem (but may be saveable) and probably caused the abscess. One doc was able to feel the top right side and could tell that tooth is a goner (that was the one that was flaring up back in the fall when we started this whole nightmare scavenger hunt).
So there’s our boy, heroically letting these people work with him, calmer than Mike or I felt, and I'm so proud of him, can’t even tell you. Then Nurse Judy came in, and she started raising concerns about whether they can get this done, though, because the general dentistry and the oral surgeons have to coordinate, and then the head honcho surgeon came in to evaluate, and before we knew it they were telling us there's no way they're rolling him into the OR and doing this today. After we were told we were coming in for a procedure. After we'd been making him fast all fucking day. It's like noon now. And we're now on our third 120-mile round trip excursion in our quest to get our child medical care he desperately needs and we’re still nowhere..
Mike got upset. REASONABLY upset. We both did. He started giving the head honcho doc a bit of an earful about the runaround we were getting, and he was absolutely right. I could see both points of view…head honcho didn’t want to wheel him into surgery without any pre-op work done if it wasn’t a life or death emergency, BUT, we should have been told that before we starved our kid and packed goddamn luggage because we’d also been told that maybe he’d need to be admitted depending on how things went. Was it that young docs made promises that old doc would not approve? Something was truly and rightly fucked. I tried to keep everybody calm because I hate confrontation and I need to get over it. They keep reassuring us that they'll get him set up, pre-opped, in for his procedure asap, and they'll take great care of him. Which I'm sure they will. But wait, there's more.
I mentioned the area we were in is like a Montefiore Disney World, yes? So they told us, ok, you're scheduled for next Friday, 3/11, and here's what you do now (this is after they're all texting and emailing other segments of this machine to set this up). Go to 2400 Bainbridge Ave for an anesthesia consult, an ekg, and bloodwork. I informed them there's no way he'll allow an ekg, and they're like, ok, we get it, but we'll get the other stuff done. Great. Also great is that, like I mentioned, we were advised before we began this happy Friday adventure that Cal could possibly have to be admitted, so we had luggage, with tablets, and chargers, and toys to distract and soothe him. So there we are, trudging up and down blocks, freezing our asses off as I try to coax my phone to tell me where the fuck I’m supposed to go in a neighborhood I’d ne’er before even set foot in, while Mike and I flank and hold on to our giant son in case he decides to suddenly fake right, then bolt left to hijack a falafel truck, which I wouldn’t have blamed him for one little bit..
So we got to the address the nice doctor gave us, I guess it was the Moses main campus entrance, I don’t know, and it was like Grand Central station in there, we were screaming in masks to be heard, filling out covid forms, explaining why we're there, the people at the desk argued back and forth about where we were supposed to go for the lab and pre-op and anesthesia consult. We got sent to the wrong floor. We got sent to another floor where they told us, um, he's 16, he can't have this done here, it has to be at the children's hospital across the street at 3415 Bainbridge. So we're like, are you sure, because we literally just got handed a piece of paper from the referring doctor after he's emailed and texted and phoned the world about where to send us. Nope. Across the street with you.
Ok. Cal was getting hungry now (if you could have seen how he looked at that falafel truck), and while still totally cooperating with this fucking stupid death march around the Bronx, we could tell we might not be too far from a meltdown. But we got across the street, we got sent to the right floor, we did the bloodwork. Ah, the bloodwork. Two tiny phlebotomists, Mike, and me. Ever try to do bloodwork on the Incredible Hulk when the Incredible Hulk is in no mood for such shenanigans? The tiny women were thankfully great at their part of the job, and Mike and I just sort of heaved our bodies over his in the blood chair and held him as best we could and somehow they got it done. And THIS time, I did not have to go to the ER because I kept my sternum away from his elbow. Fool me once…
Now for the anesthesia consult. Same building, the children’s hospital. MIght have even been the same floor, I forget. Beautiful anesthesiologist PA gives us a great consult, explains things, Cal let her listen to his heart. She showed us where he'll go for surgery and recovery, yippee skippy, we're done. Except, and this is fun news, we have to get him Covid swabbed on Tuesday (tomorrow) when we take him to the pediatrician for a pre-op consult (again...this may be the third one at this point, I don't even fucking know).
One more special detail, this is important because of a paragraph coming up fairly soon. One of the oral surgeons prescribed another course of antibiotics (Cal had finished the one he took when the golf-ball-sized abscess blew up in his mouth a couple weeks before) to make sure things don't go all sideways again. He made it a larger dose, cuz he’s a big kid and we want to be sure nothing festers.
So that was it for Friday, home again home again, jiggedy jig, what a great day. Got the boy started on the new higher dose of amoxicillin, and called it a day. I might have drank all the vodka that evening, I don’t remember.
Then we arrived at Saturday morning to find that Calvin was running a low-grade temp and seemed a little listless and not himself and then suddenly vomited an ocean of vomit all over the living room. We may need to throw out the couch. I’m pretty sure we should. He (blessedly) never pukes, and he doesn't know WTF is happening, so all we could do was get him safely finished up where he was, clean him up, etc. I quickly spiralled into a full-blown anxiety attack in my head over whether he was in some severe infection mode, or having an allergic reaction to the antibiotic, or what. I was scared off my ass that something really bad was happening. But once he was all puked out and cleaned up, he didn't seem to be in any danger. Spoke to his pediatrician on call and she recommended reducing the dosage of the antibiotic to what it had been before, especially since it's prophylactic and he doesn't seem to have a bad active infection. Maybe the antibiotic was just too much and it had to come up, along with the rest of the gallons upon gallons of Mt. Vesuvius-like-lava substance that had been in his stomach.
[OR, maybe in one of the 85 petri-dish examining rooms we’d toured the day before, a wee bit of norovirus came home with us. Keep that in mind for later.]
Yeah, so panic had abated and Cal seems bleh but not dangerously so and no more puking. Which was great. Then, later that day, I got an email with his Montefiore MyChart and was happy to see that he's scheduled for surgery for the right day. Friday, March 11. HOWEVER THE ADDRESS IS A COMPLETELY DIFFERENT ADDRESS FROM ALL THE PLACES WE'VE ALREADY BEEN. It says 111 East 210th St., which, yes, is part of that compound of medical facilities, Moses Hospital to be exact, I suppose, but what the fuck? The beautiful lady at 3415 Bainbridge, the Children's Hospital part, said we'd be THERE. How the fuck are we supposed to know where to take him? I'm going to get a call (they say) on Thursday confirming anything, but at this point I have no faith that we will be sent to the right place, and he'll be fasting again, and it'll be a longer fast because we're scheduled for later, and I just can't, folks, I just can NOT. There won’t be a food truck in the God-Blessed borough of the Bronx, NY, that will be safe. Yeah, so stay tuned. We’ll be somewhere.
Ok, where am I, so then we had Sunday and I tried to screw my head back on straight for all the things we have to work out this week for "Operation Get Calvin Out of Pain and Constant Danger of Infection." BUT, guess what happened next. Sunday night into Monday morning, Mike Simon, unflagging and intrepid husband steadfastly marching us through every second of this motherfucking debacle, puked his guts up. And now it’s Monday, and there’s been more puking, and shaking, and chills, and during one of his vomiting sessions this morning something popped on his right side around his ribs, sending him into the kind of pain that makes your eyes roll back.
I am not fucking kidding you.
Urgent care thinks it's a pulled muscle, and he's not running a fever, but if he doesn't improve with a muscle relaxant (which he can't take until the anti-nausea meds kick in), I need to get him cat-scanned to make sure he doesn't have something flared up in there. And the odds of him being able to safely help me get Cal's nose swabbed tomorrow? Care to lay any bets? The usual procedure is the nurses come to the car window, I sneak into the trunk of the SUV, Mike sits in the back seat next to him, I hear a bell go off in my head, and it’s Wrestlemania for as long as it takes.
I'm a lapsed Catholic, but we need all the help we can get, so if you need me, I’m in a corner somewhere, rocking back and forth, rosary beads flying through my fingers on a continuous loop, praying that my man and I are both are fit as fiddles on Friday. I'm superhydrating so that when I get this goddamn stomach bug (that I know we got from one of those goddamn germ casserole buildings we were hitting, door to door, like some kind of twisted, bizarro Halloween nightmare), I don’t end up attached to an IV pole while we’re taking care of business.
So that’s all the news that’s fit to print around here. Stay tuned to this channel for updates. Let me entertain you. Let me make you smile.
The special needs clinic at Rose F. Kennedy Children’s Hospital in the Bronx (associated with Montefiore and Albert Einstein Hospitals) was our next stop, because a few weeks ago, a very nasty, golf-ball size abscess erupted near Calvin’s lower left canine tooth, and there was plenty of fever to boot. The staff there were great, they were even able to peek into his mouth a little. And he sat voluntarily in the chair under all those lights!!!!! Holy smokes!!! But turns out they can't treat him at their facility because of his size. I don't entirely understand, but it's something about the safety of his breathing being ok while they do the procedure in their setting. They do IV sedation, and for a guy who's maybe 180-200 lbs and average height, what they do there is safe and fine. But Calvin is way bigger than that, and his neck is big, and he won't be easy and cooperative, so that place is a no go because they worry about his breathing. At some point I want to understand better what the anesthesia difference is, but it’s been too overwhelming to grasp so far. I guess it's not a traditional OR setting and that’s why it won’t be safe enough. And of course that’s all we needed to hear. We need it to be safe enough, full stop. So what’s next?
The fine professionals at Rose F. Kennedy referred us to another Montefiore dental clinic in the Bronx, promised we’d hear from this other office within a day, and indeed we did. They set us up to come in within just a few days after our first trip to the Bronx.. The surgeon I spoke to told us to make sure he was fasting, because the plan was to get the problem tooth/teeth dealt with, then put him on the 6 month wait list for a whole dental workup where they do a full cleaning and scaling and anything else that needed to be done—which is what we would have been able to get done in Valhalla if that whole deal hadn’t gone South like Sherman.
So this past Friday, we got to the clinic on Kossuth Ave in the Bronx. This neighborhood is like Montifiore Central. Moses Hospital, Albert Einstein, the children’s hospitals, tons of medical offices, all Montefiore. So we get ourselves into a parking structure that's fairly close, traffic and getting around was predictably nightmarish, but fine, whatever, and we gave our boy a nice little walk around the Bronx (he did great, although it was fucking freezing), then finally got him up to the office for his appointment. He waited on a line outside the office with us like a champ, not a peep out of him, no trying to escape. The staff makes sure to confirm he's been fasting (they should have been able to tell by the way he was looking at everybody like he was hallucinating them as a hamburger or hot dog like in the Bugs Bunny desert island cartoon), They got us into an examining room, he sat in the chair, nice as you please. A couple of oral surgeons do a great job tag teaming, each gently poking around in there and peering with flashlights and they can get the general idea that the molar right behind the left canine on the bottom is a problem (but may be saveable) and probably caused the abscess. One doc was able to feel the top right side and could tell that tooth is a goner (that was the one that was flaring up back in the fall when we started this whole nightmare scavenger hunt).
So there’s our boy, heroically letting these people work with him, calmer than Mike or I felt, and I'm so proud of him, can’t even tell you. Then Nurse Judy came in, and she started raising concerns about whether they can get this done, though, because the general dentistry and the oral surgeons have to coordinate, and then the head honcho surgeon came in to evaluate, and before we knew it they were telling us there's no way they're rolling him into the OR and doing this today. After we were told we were coming in for a procedure. After we'd been making him fast all fucking day. It's like noon now. And we're now on our third 120-mile round trip excursion in our quest to get our child medical care he desperately needs and we’re still nowhere..
Mike got upset. REASONABLY upset. We both did. He started giving the head honcho doc a bit of an earful about the runaround we were getting, and he was absolutely right. I could see both points of view…head honcho didn’t want to wheel him into surgery without any pre-op work done if it wasn’t a life or death emergency, BUT, we should have been told that before we starved our kid and packed goddamn luggage because we’d also been told that maybe he’d need to be admitted depending on how things went. Was it that young docs made promises that old doc would not approve? Something was truly and rightly fucked. I tried to keep everybody calm because I hate confrontation and I need to get over it. They keep reassuring us that they'll get him set up, pre-opped, in for his procedure asap, and they'll take great care of him. Which I'm sure they will. But wait, there's more.
I mentioned the area we were in is like a Montefiore Disney World, yes? So they told us, ok, you're scheduled for next Friday, 3/11, and here's what you do now (this is after they're all texting and emailing other segments of this machine to set this up). Go to 2400 Bainbridge Ave for an anesthesia consult, an ekg, and bloodwork. I informed them there's no way he'll allow an ekg, and they're like, ok, we get it, but we'll get the other stuff done. Great. Also great is that, like I mentioned, we were advised before we began this happy Friday adventure that Cal could possibly have to be admitted, so we had luggage, with tablets, and chargers, and toys to distract and soothe him. So there we are, trudging up and down blocks, freezing our asses off as I try to coax my phone to tell me where the fuck I’m supposed to go in a neighborhood I’d ne’er before even set foot in, while Mike and I flank and hold on to our giant son in case he decides to suddenly fake right, then bolt left to hijack a falafel truck, which I wouldn’t have blamed him for one little bit..
So we got to the address the nice doctor gave us, I guess it was the Moses main campus entrance, I don’t know, and it was like Grand Central station in there, we were screaming in masks to be heard, filling out covid forms, explaining why we're there, the people at the desk argued back and forth about where we were supposed to go for the lab and pre-op and anesthesia consult. We got sent to the wrong floor. We got sent to another floor where they told us, um, he's 16, he can't have this done here, it has to be at the children's hospital across the street at 3415 Bainbridge. So we're like, are you sure, because we literally just got handed a piece of paper from the referring doctor after he's emailed and texted and phoned the world about where to send us. Nope. Across the street with you.
Ok. Cal was getting hungry now (if you could have seen how he looked at that falafel truck), and while still totally cooperating with this fucking stupid death march around the Bronx, we could tell we might not be too far from a meltdown. But we got across the street, we got sent to the right floor, we did the bloodwork. Ah, the bloodwork. Two tiny phlebotomists, Mike, and me. Ever try to do bloodwork on the Incredible Hulk when the Incredible Hulk is in no mood for such shenanigans? The tiny women were thankfully great at their part of the job, and Mike and I just sort of heaved our bodies over his in the blood chair and held him as best we could and somehow they got it done. And THIS time, I did not have to go to the ER because I kept my sternum away from his elbow. Fool me once…
Now for the anesthesia consult. Same building, the children’s hospital. MIght have even been the same floor, I forget. Beautiful anesthesiologist PA gives us a great consult, explains things, Cal let her listen to his heart. She showed us where he'll go for surgery and recovery, yippee skippy, we're done. Except, and this is fun news, we have to get him Covid swabbed on Tuesday (tomorrow) when we take him to the pediatrician for a pre-op consult (again...this may be the third one at this point, I don't even fucking know).
One more special detail, this is important because of a paragraph coming up fairly soon. One of the oral surgeons prescribed another course of antibiotics (Cal had finished the one he took when the golf-ball-sized abscess blew up in his mouth a couple weeks before) to make sure things don't go all sideways again. He made it a larger dose, cuz he’s a big kid and we want to be sure nothing festers.
So that was it for Friday, home again home again, jiggedy jig, what a great day. Got the boy started on the new higher dose of amoxicillin, and called it a day. I might have drank all the vodka that evening, I don’t remember.
Then we arrived at Saturday morning to find that Calvin was running a low-grade temp and seemed a little listless and not himself and then suddenly vomited an ocean of vomit all over the living room. We may need to throw out the couch. I’m pretty sure we should. He (blessedly) never pukes, and he doesn't know WTF is happening, so all we could do was get him safely finished up where he was, clean him up, etc. I quickly spiralled into a full-blown anxiety attack in my head over whether he was in some severe infection mode, or having an allergic reaction to the antibiotic, or what. I was scared off my ass that something really bad was happening. But once he was all puked out and cleaned up, he didn't seem to be in any danger. Spoke to his pediatrician on call and she recommended reducing the dosage of the antibiotic to what it had been before, especially since it's prophylactic and he doesn't seem to have a bad active infection. Maybe the antibiotic was just too much and it had to come up, along with the rest of the gallons upon gallons of Mt. Vesuvius-like-lava substance that had been in his stomach.
[OR, maybe in one of the 85 petri-dish examining rooms we’d toured the day before, a wee bit of norovirus came home with us. Keep that in mind for later.]
Yeah, so panic had abated and Cal seems bleh but not dangerously so and no more puking. Which was great. Then, later that day, I got an email with his Montefiore MyChart and was happy to see that he's scheduled for surgery for the right day. Friday, March 11. HOWEVER THE ADDRESS IS A COMPLETELY DIFFERENT ADDRESS FROM ALL THE PLACES WE'VE ALREADY BEEN. It says 111 East 210th St., which, yes, is part of that compound of medical facilities, Moses Hospital to be exact, I suppose, but what the fuck? The beautiful lady at 3415 Bainbridge, the Children's Hospital part, said we'd be THERE. How the fuck are we supposed to know where to take him? I'm going to get a call (they say) on Thursday confirming anything, but at this point I have no faith that we will be sent to the right place, and he'll be fasting again, and it'll be a longer fast because we're scheduled for later, and I just can't, folks, I just can NOT. There won’t be a food truck in the God-Blessed borough of the Bronx, NY, that will be safe. Yeah, so stay tuned. We’ll be somewhere.
Ok, where am I, so then we had Sunday and I tried to screw my head back on straight for all the things we have to work out this week for "Operation Get Calvin Out of Pain and Constant Danger of Infection." BUT, guess what happened next. Sunday night into Monday morning, Mike Simon, unflagging and intrepid husband steadfastly marching us through every second of this motherfucking debacle, puked his guts up. And now it’s Monday, and there’s been more puking, and shaking, and chills, and during one of his vomiting sessions this morning something popped on his right side around his ribs, sending him into the kind of pain that makes your eyes roll back.
I am not fucking kidding you.
Urgent care thinks it's a pulled muscle, and he's not running a fever, but if he doesn't improve with a muscle relaxant (which he can't take until the anti-nausea meds kick in), I need to get him cat-scanned to make sure he doesn't have something flared up in there. And the odds of him being able to safely help me get Cal's nose swabbed tomorrow? Care to lay any bets? The usual procedure is the nurses come to the car window, I sneak into the trunk of the SUV, Mike sits in the back seat next to him, I hear a bell go off in my head, and it’s Wrestlemania for as long as it takes.
I'm a lapsed Catholic, but we need all the help we can get, so if you need me, I’m in a corner somewhere, rocking back and forth, rosary beads flying through my fingers on a continuous loop, praying that my man and I are both are fit as fiddles on Friday. I'm superhydrating so that when I get this goddamn stomach bug (that I know we got from one of those goddamn germ casserole buildings we were hitting, door to door, like some kind of twisted, bizarro Halloween nightmare), I don’t end up attached to an IV pole while we’re taking care of business.
So that’s all the news that’s fit to print around here. Stay tuned to this channel for updates. Let me entertain you. Let me make you smile.
“Well, I found the secret to life
I found the secret to life
I'm okay when everything is not okay.” - Tori Amos
I found the secret to life
I'm okay when everything is not okay.” - Tori Amos
