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.
