The washing machine is making ominous groaning noises when it spins. I was trying to fix it without opening it up its guts this morning mainly by wishing the sound would go away while I petted it nicely and whispered it sweet nothings which was unsuccessful. I propped my feet on the spinning machine and took at good look at my COVID toe. It’s not really a COVID toe – I’ve never had covid. I dropped a 30 pound weight on it at the beginning of the pandemic and broke it which meant I was not working at the hospital in March. It also meant the entire toenail became bruised. I wonder if the toe nail will grow out first or if the pandemic will end first. It looks like I have another 9-10 months on the toe. That sounds about right for the pandemic too.
UMD dental school was the first place we went to who did not take Edda’s Medicaid which is her secondary insurance. I couldn’t believe it. I tried to insist that they scan it in so they would have it on her record, but they insisted that they didn’t take it and that they weren’t allowed to scan it. I was like – this is the University of Maryland? The public university of the state, right? And you won’t take the state’s insurance? The appt was really cheap ($70 for the exam and the x-ray), so maybe they are already a subsidized Maryland medical system? I dunno.
I started taking Spanish lessons about 2.5 months ago. I found a teacher who lives in Ireland. She speaks seven languages. She’s from Spain and I realize now that that was a tactical (or strategic?) error as I should have found a teacher from Mexico b/c of regional differences. (I just discovered that they don’t really conjugate you (plural) in Mexico, but they do in Spain). But now we are too far in and I like her and I think I entertain her as a student. I also found an internet friend in Baja Mexico that I’m practicing with – we do a language exchange. It’s strangely entertaining. I’m really no good at this. I keep telling myself that I need only 1,000 words, there has to be room in my brain for an extra 1,000 things. That doesn’t seem like too many. I’m entertaining my patients even more. I had a spanish speaking -only older lady a few days ago who held my hand and looked at me and said you speak spanish! And I laughed and laughed.
We visited my alma mater today. The UMD School of Nursing. 2020 is the god damn international year of the nurse. It’s Flo’s 200th birthday. She is not only the founder of modern nursing, but also a kick ass statistician who used data to improve/save the lives of many people through policy changes in public health.
We also visited Edgar Allen Poe’s grave. A bit freaky.
Why go on these adventures? Really, it was for our 8th dental visit (and pretty much last hope dental hail mary visit) in as many weeks. We went to the UMD dental school, where they finally could help us. We got a good x-ray – the teeth look healthy all the way to the roots. They are still loose. But we’ll take a conservative approach and see if they heal more in the next 2-4 months. They might. Or the might not. If they need to be removed or root canal-ed, they will be able to do it there. They even mentioned maybe doing some cosmetic work if necessary. But we’ll see if we can save the teeth by just waiting. I LOVE THIS PLAN. It’s my favorite plan always – which is do nothing and then let’s see. Thank goodness we have a plan. We have people who can help. The reason we couldn’t make an appointment 4 weeks ago is because they’ve been closed for 4.5 months for the pandemic, only reopening a couple of weeks ago.
So I did hunt down some ice cream. After our letdown of a Children’s appointment (after which I could not do work, I could only hide in a closet with a blanket and pillow and take a nap) we went to our first group outing since the start of the pandemic. Catherine (the one in the red shirt) hosted a non-school sponsored, non-Best Buddies affiliated outdoor hang out/ice cream social. Now, I’ve had a lot of people interaction with masks and face shields at the hospital, but at the hospital, I really make no effort to physical distance except to banish hugs from my repertoire (though management does try, they removed a lot of chairs from the conference rooms and they also blocked out every other computer at the nurses station). So this is our first attempt at “hanging out” socially distanced and with masks. It was kind of OK? I can’t hear people very well when they wear masks and are six feet away from me. It’s basically impossible to have people stay six feet apart, everyone (who I believe are 100% trying to stay 6 feet apart), just naturally drift towards each other trying to hear or passing soccer balls. It wasn’t bad.
Maxi was beside herself with delight. She watched me, Jeremy and Edda prepping to go to the social and she flipped out and asked to come with us by tap dancing around Edda wheelchair and wagging her tail. I think she’s bored too. She got a doggie ice cream cone at Carmen’s – banana flavor.
And, the ice cream! So delicious. I’ve been on a pandemic diet. Meaning, the first three months, I was gaining weight quickly and I was seeing numbers on the scale that I hadn’t seen for years and then maybe six weeks ago, I had had enough. I stopped snacking (which I’ve tried to do for many years unsuccessfully because I love snacking – esp those Giant giant cookies that you can buy for less than $2, but somehow I managed to think of it in a particular way (avoiding insulin spikes) this time around – or else I’m just stressed and unable to eat) and I’m slowly dropping back down to pre-pandemic weight. And so it meant I hadn’t eaten since 11:30 am and we hadn’t had dinner yet and I ordered a fall gelati which is a generous slice of a blondie brownie with two dollops of vanilla ice cream which at first I thought I couldn’t finish, but I finished the whole thing in about two minutes flat and it just might have been the most delicious thing I’ve eaten in six months and it was great delight to see that Edda was enjoying her serving as well and was in a great happy mood the whole evening until we tucked her into bed. Look at her so happy! I gotta kind of soak it in because those front teeth are gonna be gone someday soon. Bwahaha. 🙁
This only scratches the surface of my time. I’ve documented patterns of incompetent and abusive management, institutional policies that undermined and forced out BIPOC staff, and more unbelievably appalling behavior at @ucsusa: https://t.co/A8lHFSujZq
At my work: On Tuesday, again we were short staffed at the hospital. I had 6 patients which is 50% over the ideal number of patients. I did have the day off on Monday, but really, it is not enough time to recover to do it all again. It is days like yesterday that I believe the next step I need to do is to do union work for nurses. It’s not safe for me, it’s not safe for patients when I am stretched so thin and very tired. I did not lose my mind (when we are stretched so thin, no one can help you because everyone is so busy and certain things need two people (some things like blood transfusion for an actual witness other things you just need strength like lifting), but I did run out of there as fast as I could after I handed over my responsibilities to the oncoming nurse. These are the things I did on Tuesday: manage NG tubes, manage a chest tube, manage a wound vac, find a polar ice cooling bath, have a patient threaten to walk out AMA (against medical advice) and try to convince them to stay, try to have conversations in three different languages, coordinate COVID testing with surgical teams, interventional radiology teams and the lab. I’m extra weepy today.
Vince’s COVID antibody testing is still locked out of the computer system. Because he is over 18, I can’t really manage all these accounts without his authorization. So I have to catch him when he is awake to do this stuff with me. Which is hard to do because he is hardly ever awake during business hours. I had to introduce to him today, phone trees and when to press zero and when to wait and how long to listen to hold music with LabCorp. I have very low expectations of when we will get the results. Now I’m just worried that the account associated with his email address will never get verified and then when he gets any more results from LabCorp for the rest of his life, he will not be able access them unless he does it from a different email address. This week, I can not imagine that he will be going to CA. Even if the dorms are open, is it even ethical to have him travel there if it isn’t necessary? I dunno.
Edda’s teeth are most likely going to have to be pulled. This makes me weepy. You know what else makes me weepy? When you stand in the hospital that has in its name with word National in it and on all their promotional paperwork they say they are ranked in the top 10? top 5? of all the children’s hospitals in the country and they (very nicely) hand you a sheet with a list of other providers and then they pretty much say, sorry, we can’t help you out here. wtf? I will feel better about this tomorrow. I’m too tired to process this properly. I think I’m going to find some ice cream.
Aaagghghghahahgg. OMG. Sundays at the hospital can be either easy-ish where you discharge a bunch of patients in the morning, no one gets admitted from the ED and the rest of your patients are comfortably waiting for Monday morning procedures. Or else, you can have a Sunday like yesterday where you are short staffed, the patients are coming and going like crazy and people need emergent care and it’s hard to track down people because it’s Sunday and people like to be playing golf! I couldn’t have done it without my charge or my tech. And finally, the night shift crew who graciously took on the things I left hanging at the end of the shift because I just couldn’t take it anymore.
Jeremy wanted me to critique a webinar that he gave earlier in the week. Not for content, but for the web camera part. He (like many other people) has spent a lot of time optimizing his work-from-home webcam/microphone/lighting set up over the past 4/5/endless months. It’s constrained mostly by availability of various desirous electronic components which are in high demand, but (I hope) also constrained by our relative cheapness. He’s trying to get the Honda Accord hybrid of mics/cameras and not the Tesla versions which I think there might be higher availability because of the higher price point. So there he is wearing his Zoom shirt and Zoom tie..though I think the Zoom tie was making its debut appearance. The Zoom shirt is used everyday. Same one. Taken on and off for an hour at a time (though once he started undressing while the camera was still on and a considerate co-worker texted him to tell him he was unbuttoning in front of everyone). Jeremy asked me if his head appeared too large. I thought his head size was fine, but he was never looking directly at the camera which is slightly annoying to me, but he said that that was hard to do while navigating the slides. And I was like – you sure you want Totoro in the background? I mean, I don’t think anyone else has Totoro in their background. And Totoro is as big as your head. Jeremy said that everyone absolutely loves the Totoro and that he can explain that he’s working in his daughter’s room. I said – ok, if you insist on the Totoro, then you need to get the glare off of the glass in the picture frame.
I came home last night after a hard shift and Jeremy was making dinner for me and he found this blender completely sheared of its blades. Jeremy cursed Vince’s name to the sky. I was like – we’ll just have to throw it away. And then Jeremy found the replacement part for $10 which is on its way to us. This morning when Vince was awake, I asked him if he noticed that he broke the blender. I broke the blender? he asked. I showed him the evidence. He said – oh, I usually make smoothies in the dark and I did notice some black stuff when I put it back into the cabinet. I’m like – did your smoothie smooth? And he said – yes! It got done and it was delicious. (It was a wedding blender, I’m pretty sure).
I, of course, saved the worst news for last. It’s hard to follow this story – but this is our 6th dental-related appointment so far trying to find someone to help us – we are now two months out from Edda’s initial dental trauma. This was an oral/facial surgeon referred to us by a UMD dental clinic. This surgeon (very nice) recommended that the teeth get pulled. This was something that I wasn’t really prepared to hear so I was a little knocked over. But I recovered nicely (at least I thought so – which means (in my mind) that I did not spend the rest of the afternoon crying, but I think I actually was able to do some more work after I got home)). She thought that splinting the teeth would not go well because the teeth are not in the original position and are too loose and she would have recurring problems that would come from Edda’s incessant teeth grinding and possible increase in seizures. She could do the extraction in the office, but not in a hospital setting and she could not do any extra dental work (cleaning, sealants, fillings, etc) at the same time. She recommended the UMD dental school (where Jeremy had tried to make an appointment at about two weeks ago, but the phone tree ended where it would just hang up on you arbitrarily no matter which buttons you pushed). So – we have 2 appointments next week. One at the Children’s dental clinic and then another one at the UMD dental school (success at phone tree!). You know, you have that initial, terrible loss at the beginning when you get the Rett Syndrome diagnosis. But then what follows are little (or not so little) losses everyday that can be heartbreaking too. It’s vain, right? What’s Edda going to look like missing two front teeth? For sure stranger than she looks now. Does it even matter? She’s so far off normal, that who cares about two more teeth. I’m not a vain person, I never craved for my children to be “beautiful” in the traditional way. But Edda minus two front teeth makes me sad.
I’ve been taking the time to hang out with Jeremy during dinner-making hour(s). I can tell that I’m doing it because 1.) I’m less productive at work and 2.) I’m more productive at making things like onion, cheese and tomato pies (I’ve made two already this week). And mostly 3.) Jeremy is happier. We talk about whatever he wants to talk about. A lot of work stuff. A lot of bicycle stuff. Last night he sold his first used bicycle item on a Facebook used bike stuff group. So we talked about venmo vs paypal and what price he should sell it at. It was a $100 bike saddle that he sold to someone from DC for $50 – I think he could have gotten more, but I was the one who suggested the $50 price point. I hate people who think they should get $90 on a used thing when they paid $100.
While I was making my onion, cheese and tomato pie, I got a call from the minute clinic reminding Vince of his 6:30pm TB read time. I rushed upstairs at 6:20 to wake him up (!!?!) for him to go. I got all irritated that I needed to remember this stuff for him – but Jeremy asked if I had promised that I would do it and I did promise that I would do it, but kind of in my head, I promised as backup against – you know, such things like an alarm clock. I should have set an alarm for myself to remind him, but I did not. I let go of my irritation pretty quickly. Anyways, he did get his TB site read – negative! But later I asked if he submitted the paperwork to the health dept at Davis and he said – oh no! I forgot! And we go on. I haven’t been paying attention to any of Vince’s registration or paperwork deadlines at college. It’s up to him, I think he had to go all the way to the general registration window to sign up for all his classes. I think there were 3-4 windows of increasingly broad student population access. So he read up on some of his professors. The reviews track very closely to the grades the students got in the class so Vince can’t quite tell how he will feel. He just knows that the calc teacher does not curve the tests. Yikes.
This week I feel like no way will Vince be in California in late September. He has friends who are moving in five days to college, packing up. We’ll see.
Edda went with us this weekend to Goodwill and the dump. You see our old toilet back there? I got to throw it into a big dumpster where it smashed into a million pieces. An inglorious end to a decade of service in our house. The house is lighter and just 1/2 a minivan less stuff. We still have too much stuff in the house. Jeremy spent the weekend decompressing and not touching his work. He’s still managing some back pain which originated with lifting a toilet and Edda (not at the same time) and was probably aggravated with poor sleep and stress from his job. So Jeremy cleaned the kitchen, replaced light bulbs, organized the garage. I tried to pay attention to him. But I did work at home a lot this weekend.
My mom dropped off a lot of her summer tomatoes. I made them into a tomato pie last night. It was ok, but I think it will be more delicious when reheated.
Vince is starting to register for classes. He accidentally missed his first window for registration (which I guess means now that all the classes at good times and/or popular professors were taken and then he groaned and thought it meant that he had to take 8 am classes). Being eligible for registration meant that he had to update his immunization records and which also meant that he had to get a TB test. Which meant that he stood in front of me all frustrated asking me how to get all these records and how to make an appt for a TB test. So I walked him through everything. Told him how to make an appt at the minute clinic for the TB test. How to use an insurance card. How to make sure he was available for a reading in two days to see about the test. How to make sure he got the right paperwork. He groaned and said – this is hard! All this paperwork. And I laughed. Dude, this is stuff they don’t teach you in school.
We had an appointment at UMD dental clinic on Friday morning. The appointment was at 7:30 am, so we were out of the house by 6 am. I was prepared to go to the downtown Baltimore clinic, but Jeremy said that the office was in the suburbs of Baltimore and not downtown. Anyways, it turned out that we saw a very nice pediatric dentist who said that 1) Edda has beautiful teeth and 2) that she did think the jaw was broken and referred us to an oral surgeon who takes care of all the special needs kids from the clinic. This oral surgeon is not in the same clinic as the UMD dental clinic. Edda actually did great at the appointment – not too much squirming. One the way home, Jeremy thought that maybe we should cancel the early August appointment at the Children’s clinic because we would receive no more information on Edda’s teeth. I countered that we should keep the Children’s appointment because even though we would receive no extra information, I just wanted that referral in the Children’s network in case the UMD oral surgeon thing didn’t work out. I already called out of the hospital shift I was suppose to work during the Children’s appointment and that appointment took approx 3-4 hours on the phone to get. I do not want to waste that opportunity.
Also, on the way home, Jeremy commented that the 1.5 hour conversation we had back/forth from the Baltimore dentist was the longest conversation we’ve had in a long time. It was a nice conversation – mostly about Jeremy’s work. Jeremy can’t talk about his work before bed (which is my most natural long talking time with him) because he’ll just be unable to sleep. The other time I tend to want to talk to him is right when we get up – but I’m much more of a hop out of bed to full speed right away person than he is. Jeremy need a couple of hours to settle into the day. He really wants to chat while making dinner from 5-6 pm. But I feel like I need to keep working during that time. Anyways, I’m working a bit too much to take care of Jeremy’s talking needs. I’m going to reduce my hours at the hospital even more in a few weeks. So I’ve gone from working 2 jobs at the beginning of the pandemic, to 1.79 jobs, to now 1.6 jobs, and then I’ll soon be at 1.3 jobs. Then I think I can stick in the hour of conversation about Jeremy’s work at dinner time. I can forget, I get a lot of conversation at the hospital and generally have no extra need for it at home and I don’t work through problems by talking, but Jeremy literally hasn’t been out of the house except for grocery shopping since the shutdown and his work can be a touchy thing to talk about with other people who don’t know the whole lowdown. And he for sure works things out in his head by talking to another person.
Vince became an Eagle Scout last night. We’ll technically, he has to be approved by national now before he is an Eagle, but the last commitment that he had to do is done. We were very lucky to have a ceremony with one of his best friends, Sam. It was so nice to see his family and chat with them.
The ceremony was indoors which I was slightly not very happy with, but the boys got it done. Vince was nervous about it – there is a Board of Review with scout leaders that he doesn’t know, and it can be a formal thing – kind of like a nice dissertation presentation. Everything is suppose to be done by one’s 18th birthday – but even before the pandemic, you got a 3 month grace period to hand in the paperwork and have the board of review. And then after the pandemic, you got another 3 months. So Sam’s fake “18th” birthday was going to be on Sunday, so this board needed to happen now and thankfully, Vince tagged along. I think technically, he had a few months more than Sam, but I hated dragging things ooouuuuttt so long since now all the logistics are extra complicated due to COVID.
Not only did we have to call in like 3 extra troop leaders from other troops, but we had to have character witnesses, so Nat and Dara came to join us.
I got to talk to Kate for a bit about Sam and his college stuff. I’m not sure if this is true because we don’t talk that much, but I feel like Kate and I are kind of on the same wavelength about things. Sam is going to ASU in about 4 weeks which is having a mix of online and in person classes. They are making it so that if you want to do it all online, you can, but the premise is that in person classes are available. And Kate suspects that if the prof doesn’t want to be in-person, then it goes to completely online. She’s still sending him – saying that it would tak a lot to convince him not to go, though she mentioned that he’s only heard from 1 out of 3 suitemates and all the Facebook moms are saying no way, no how are they sending their kids. I somehow can’t find the Davis mom Facebook group so I don’t have any feeling about what the parents are thinking – though I suspect it’s much the same as the ASU mom group. Vince’s deal seems to be that 100% of his classes are going to be online, but he still preferentially wants to move to Davis. I’m pretty sure Davis will be happy to take our housing/dining money – though maybe the only students on campus will be the people who are homeless or have no internet at home or have visa problems. On the one hand, I get it. He wants to move out and do his own thing. On the other hand, I’m worried that the online classes will get hard and then there won’t be people around and that he’ll be lonely and struggling. I told him – you know, you’ll go there and there won’t be classes, there won’t be any college sanctioned gatherings, no clubs, no sports – no nothing. Absolutely nothing to join – it will take a lot of initiative to figure out someone to hang out with. It’ll basically be your own apartment and online classes you are suppose to go to in a college town that will be mostly empty. He said that he knew that and that I shouldn’t worry – he’d figure something out. Anyways, that’s how it’s looks today. As far as his antibody testing – it’s in computer/internet hell. When I log into look for the results, LabCorp tells me that he’s not authenticated and that we need to send in copies of his IDs and wait three business days. Well three business days are gone, the account is still locked out and now I think some weird internet thief has a copy of his ID. Anyways, we know nothing. Jeremy says it might be bad if he stays here and does the online thing. He means bad for me. Mostly because I won’t be able to help myself meddling in first year ChemE classes and it will drive me crazy because Vince is fine with school – he just doesn’t do it the way I do it, which, of course, is the only right way. He does it the crazy way. And if he stays home, I have to look at stuff like a shaving cream mohawk when really, this is much better for a peer audience.
