Endless Thread - A Parent, A Nurse, And A Patient

Episode Date: April 10, 2020

Another look at the far-reaching impact of the coronavirus pandemic. In this episode, we hear from a parent who recently had an infant in the NICU, a nurse who fears for his safety, and someone who recently recovered from COVID-19.

Support for endless thread comes from MathWorks, creator of MATLAB and Simulink Software, to design and develop engineered systems, accelerating the pace of discovery in engineering and science. Learn more at Mathworks.com. Support for WBUR comes from Is Business Broken, a podcast from the Mayrotra Institute at Boston University that explores questions like, why is innovation in healthcare so hard? Is ESG just greenwashing? of course, is business broken? Listen, wherever you get your podcasts. Produced by the I-Lap at WBUR, Boston. Ben. Amory. It's week four of quarantine. Yeah, but I mean, who's counting? I am. It's week four. How you doing?

I've moved from bread making to tortilla making. And tortilla making is good. I'm putting all the things in tortillas now. Good. Yeah. How about you? So I tweeted a few weeks ago that some little girl wrote in another little girl's driveway on my street. It said, hi, Sadie, I hope we can play together again soon from Emma.

And then this week, I saw what I believe to be Sadie and Emma going on a walk together across the street from each other. and they were so happy. So, you know, that's hopeful, right? I think you're hallucinating. No, no, no. It was very comforting to see, and it's also been comforting to hear from some of you. You've offered reminders about the different ways

the pandemic is changing all of our lives, starting perhaps most importantly with family life. Hi, my name is Tyler. My Reddit username is StoneCyfer. and I'm located in Colorado. I have a almost two-month-old daughter in the NICU at a hospital that's about 45 minutes away from where my wife and I live. And we are having to venture out of the house to go see her, care for her, and get her breast milk that my wife is producing at home. We're spending a lot of time going back and forth.

there's a lot going on there. So we originally heard from Tyler in mid-March, which was only a couple years ago now. Okay, just kidding. It was just a couple weeks ago. But it feels like much longer, obviously, and we checked in with him again. He told us a lot has changed in the time

since I left you guys the voice memo. My daughter's home now, but my wife and I are essentially her full-time nurses, feeding her through a tube and closely monitoring her vitals. Tyler won't know the long-term severity of his daughter's issues until he and his wife are able to meet in person with specialists. We've not ruled out some scary stuff like cerebral palsy,

delayed motor milestones, like the ability to walk, etc., ability to chew and eat, or potential full motor disabilities. On the other hand, it might end up all being fine. So for now, Tyler and his wife are just taking things one day or one hour at a time. I have a mild meltdown about every 72 hours or so, which is an improvement over the 36 to 48 hour meltdown cycle I was on while Adeline was in the hospital. Baby steps. Tyler says just staying home has reduced their anxiety levels and they're settling into their new routine as a family.

Tyler is figuring out how to become a nurse for his daughter. Meanwhile, actual nurses are figuring out how to do their jobs despite dangerous circumstances. We came across a comment made a few weeks ago by the Redditor Big O. Detroit. I am a nurse at a level one trauma center hospital in Detroit. I swear COVID has been around for weeks. There are several members of my surgical team that have been hit hard with respiratory and fevers. Once our first confirmed case is in-house, all elective, non-emerger. emergency surgeries are canceled. We can expect to have our first case by tonight.

In real life, Big O. Detroit is Matt. He works in an operating room on an open heart surgery team. And by the time we spoke to him, his hospital had gotten its first confirmed case of COVID-19. And it's second and third. Matt doesn't know what the count is up to now. But they've been hit hard enough that they were trying to open another hospital just for people who have tested positive. for COVID-19. But the hospital that's doing that testing is so full right now, and they just keep getting newer cases that they really aren't able to transport them quickly enough. Have there been any deaths at either of these hospitals from COVID-19?

Yes. Do you know more about that, if the patients were older or had pre-existing conditions? The rumor that's been transferring around the one hospital is even I want to say a week or two before we got hit, it was a 22-year-old kid that came in with flu-like symptoms, and they dismissed it as the flu, and by the time he came back in, after progressing, getting worse,

they weren't really able to do it. They were going to put him on what's called ECMO, which is a system that helps to rest your lungs. But he ended up passing away, and it wasn't until a little bit later. People were kind of like, Do you think that maybe he did have this and we just didn't even know it? So clearly this particular patient wasn't tested for COVID-19.

And Matt says there are patients now that should be getting tested, but can't. We just don't have enough tests for everybody that thinks that they have something. And if their symptoms aren't very serious, I believe they're being told to self-quarantine until either symptoms get worse or, they get over it. And what about other supplies? So like masks and gloves and other protective equipment, how are your hospitals doing? So in the operating room, our standard of practice is every time you enter one of the operating rooms, you need a fresh mask. Every time you leave the operating room, you take that mask off, you throw it away, you wash your hands. And then if you go back in, the process continues. Right now at this point, they're issued one mask for the entire day.

If it does get soiled, you can replace it. But everything else, that mask is yours and you have to make it last for the day. So it's basically like extreme rationing of masks? Correct. Another resource Matt's hospital is running low on are nurses trained to work the regular floors of the hospital. As we mentioned, Matt's an operating room nurse, which means he's responsible for very different tasks than a nurse that does rounds and med people. Passes, administering medications to patients. I'm being told that they're taking operating room nurses, some of whom haven't been on a

floor, if ever, or years. And they're putting them on regular floors to take care of like handfuls of patients and do med passes, which, I mean, can be extremely dangerous and mistakes can be made. It sounds like that that's frustrating for you. I mean, is that, is this angering for you? It is. But it hasn't, oh, God, how do I sound? I make this sound about it.

It makes me sound super insensitive about it. But like, I just won't be safe on the floor because I myself personally haven't worked the floor in six years. And so you lose that skill set. And I just don't think it would be safe to expect me to pick that up in a night or two again. And that is very frustrating and that's very angry. I just wish there was somebody speaking. speaking out on our behalf for that. And there isn't.

What's your ritual when you come home? Oh, great. So what I had been doing is I was wearing street clothes in, changing to a pair of scrubs. And at the end of the day, I put my clothes back on and I come home. And once this hit, my wife would make me just strip in the garage. And then I'd go straight to the shower and then disinfect the washing machine with bleach. Matt doesn't even bother with street clothes anymore.

He goes from his commuting scrubs to his caretaking scrubs and lets the hospital handle that laundry, so there's no chance of bringing the virus home. It's one less thing to worry about at a time when he can't stop worrying. I can't help but be afraid of the unknown here. It's really kind of doom and gloom around a department when you're kind of faced with. It's not whether or not I will get infected with this.

It's a matter of when. if, you know, you're just waiting for that axe to fall. It's the day that I get it. And I'm coming home to young kids and a wife. And I worry about, am I going to get them sick? Am I going to get anybody else around me sick? Even just doing basic things that I've taken for granted. Like grocery shopping's been a huge challenge.

Just because, like, you're getting off of a shift and you want to go to the grocery. grocery store and pick something up for for dinner and you can't because the shelves are just absolutely bare. It's interesting. Like you like the way I think about the grocery store run is like the most dangerous thing that I would do or one of them because I'm working from home at this point all the time. But for you, I guess it's a little bit different because really it's like the day job is the most dangerous part of your life. And so like going to the grocery store, after your day job is almost like no big deal, except for the fact that there's nothing on the shelves.

Right. And it's like I still have to be careful when going there too. Because, I mean, the greatest irony of it all is just being very careful at work. And then, oh, I got infected because I went to Kroger. What are you doing to take care of yourself? Like, do you have any new rituals? Gosh, it sounds super nerdy. I've got a train set in the basement that I play.

with that's great i love the mental image of you you know working a 10-hour shift at the hospital and then coming home and play in with your train set yeah i mean 37 years old and i'm downstairs with a line all train set like yay it's the only world i have control over well matt thank you so much for the work that you're doing and for making time to talk to us on your day off we really really appreciate it. No, thank you. It's been a pleasure. More in a minute.

At Radio Lab, we love nothing more than nerding out about science, neuroscience, chemistry. But we do also like to get into other kinds of stories. Stories about policing or politics. Country music. Hockey. Sex. Of bugs. Regardless of whether we're looking at science or not science, we bring a rigorous curiosity to get you the answers.

And hopefully, Make you see the world anew. Radio Lab, adventures on the edge of what we think we know. Wherever you get your podcasts. There is something powerful about the sound of the human voice. Beautifully produced audio has the unique power to connect and inspire. Tell your organization's story with a custom podcast from City Space Productions, the creative studio from WBUR's Business Partnerships Team.

Become a thought leader. Recruit new talent. Reach new audiences. Whatever your goal, we can help. Discover how the magic is made at WBUR.org.org slash creative studio. We all have different skill sets to offer during this trying time. Take Jason Kieran from Pittsburgh. So I'm primarily a juggler, but I do, I've ever seen the movie Labyrinth with David Bowie?

Oh, of course. Are you going to tell me that you do Michael Motion things? Oh, my God. Listen. Ben, do you know what Jason's talking about here? Michael Motion's literal handiwork in the labyrinth? I mean, yes, I know the labyrinth, and yes, I've been to enough music festivals to understand what is happening, yes. Okay, so this is the part where David Bowie's doing

single-handed, gravity-defying tricks with a crystal ball. Yes, David Bowie, the most interesting Muppet in that movie. It's not a Muppet. He's the Goblin King. It's a crystal. Nothing more. But if you turn it this way, look into it. It'll show you your dreams. Okay, so this kind of like non-juggling-juggling is Jason's specialty.

And he's also the artistic director of the Pittsburgh Circus Arts Collaborative. So he's pretty well known in the circus sphere. And when the pandemic hit, he made this video PSA about the importance of cleaning your juggling equipment. So it's best to set aside at least one day during this quarantine to give your balls a nice hot bath. If you're feeling extra cautious, you can wipe your balls down with 90% isopropyl alcohol. But then four days after Jason posted that video,

he started to feel achy. It was a heaviness to my joints. It was a heaviness to my whole body. It was a pain in the ass to carry myself around. And then when I started to cough and I started to get the, you know, the discomfort in my throat. Jason didn't know it yet, but he had the coronavirus. And he turned to Reddit, specifically the newly formed COVID-19 positive community

to share his experience, almost like a diary. Day one, Saturday, March 21st, I started to get aches that I wasn't used to, joints mostly. Day three, dry cough started and continued for about 72 hours. Fever tremors began. Day four, Tuesday, March 21st, The absolute worst day of all of them. I would fall asleep for two hours, only to be woken up to rush to the bathroom with diarrhea. Do not confuse the word diarrhea with something you may consider familiar.

If I were still Catholic, I would no longer fear hell. This is the type of diarrhea that people in history books die from. Day five, I called my PCP, and he scheduled as tests at noon on Thursday, day six. My sense of smell and taste has entirely disappeared. They're just gone. I mean, gone. The test is a cotton swab up your nose where the swab goes all the way back to the inside of your head wall. Day 8, my breath is labored.

I can't make it up the stairs without my breath getting short. Day 9, Sunday, March 29th, the breathlessness of steps is still happening, but I do not feel like I am near death's door anymore. Day 11, Tuesday, March 31st. Today is my birthday. And what a day. I feel like I am done whole COVID-19, no fever, no cough, no breathlessness. hilarious to have all of this clear up today. Jason's 38th birthday gift, his health.

But he doesn't know who unknowingly gifted him the virus in the first place. I can pinpoint it to six possibilities. There was the cashier at the grocery store who was licking her fingers to separate bags. The colleague who flew in from Seattle for an event, just as the coronavirus was starting to spread there. The woman in line at the coffee shop who was coughing. It's impossible to say for sure. So instead, Jason has focused his efforts on figuring out who he has come into contact with. Every single person got a personal call or email or message in any way that I possibly could.

I kind of got a hold of everybody that I had been around for at least like a month before I was diagnosed. But what about Jason's wife, Amanda? She got tested with Jason and her results came back negative, even though, they hadn't been isolating from each other leading up to it. That's changed now. You know, I get to have the attic. She's got the second floor, and we can walk around and, like, not spend too much time in proximity to each other. And we haven't slept in the same bed.

And it's been about, I think, a week now. It's becoming a real drag. Amanda has a different take. The sleeping arrangement has actually, I think, been maybe good for both of us because we don't really sleep well together. So it's been like this kind of funny thing. Like, yes, it's awful not being able to, like we haven't kissed in over a week. But like the sleeping, I think that he's sleeping better and I'm sleeping better by ourselves. So that's been a funny thing that we have learned.

Another lesson, how carefree normal life is. You don't think about ways you're, you know, the way you, your body moves throughout your own home so comfortably, you know, so I just was hyper aware of where am I sitting? What am I touching? What am I wearing? How am I preparing this food? And there was definitely a balance between being a caretaker and a wife and like there would be times when he would try to like, or he, not try, but he would just start to walk into the kitchen. And I would say, what are you doing? You know, did you wash your hands? Please do not touch the refrigerator. Just so there was a lot of reminders. A lot of reminders and a lot of adjustments. Amanda says their roles at home were suddenly

reversed. He typically cooks and he typically cleans and I was doing, and I don't, I don't like cooking. So I was cooking every night, you know, and cleaning the kitchen every day. And, you know, but now I did it so much that now it's like, oh, it's fine, whatever. Their roles may very well get reversed back because Amanda has started to develop mild symptoms. She has. hasn't gotten tested again, but she thinks it would come back positive this time. So she and Jason are continuing to quarantine and trying to find ways to create moments of joy. Aside from feeling better finally, was there anything else you were able to do to celebrate your birthday? The first thing that happened was whenever I woke up and I started to cook a little bit of breakfast.

And my wife comes in and she goes, hey, I said, yeah, she was, I need some help with something. I said, what's that? something on the computer. I said, okay. So I went over and I started, I brought my coffee and my breakfast as I sat down and she pulls open her computer and it's, um, it's Zoom, you know? And on Zoom it was, I think she got 12 of my friends in all sorts of different states, all to sing me happy birthday. And, um, I got to have breakfast with 12 of my friends over Zoom and like six of them had babies on there. And it was just, it was, it was, it was, it was, it was, it was, it was, It was adorable.

How are you celebrating birthdays right now? Or just getting through regular days? How is the pandemic affecting your family, your job, your perspective on things? Record a voice memo on your phone and email it to endless thread at WBUR.org. Or leave us a good old fashion voicemail. Call 857-244-0338. Thanks to producer Josh Swartz, engineer and sound designer Paul Vicus. executive producer Iris Adler and the whole WBUR podcast team.

High fives, you guys. Also, thank you for washing your hands, for staying home, and for listening to Endless Thread. Stay healthy and talk to you soon. Bye.