It is very weird to me that if you were to think of me at all, you would imagine me going about my usual life: working at the library, doing dishes, playing Candy Crush, scrolling Twitter, fretting at the grocery store, doing laundry, procrastinating phone calls. You would not know (and would have no way of knowing) that actually I have been here at the children’s hospital with Edward since Wednesday morning. We left our house at 7:15 a.m. to drive to the big city for a morning appointment with an ENT doctor, and at that appointment the doctor checked him over and then admitted him to the hospital, and he got surgery that afternoon on an abscess in his neck.
This is his sixth abscess in 2.5 years if I am counting right, and sixth surgery (one of the abscesses didn’t need surgery; one of them needed two surgeries), and I am hoping that now we can finally start talking about PREVENTATIVE MEASURES or something, because abscesses are gross and scary and the post-surgical care involves drains/wicks that are gross and uncomfortable, and my child is getting increasingly scar-covered. I think it’s been a little difficult to figure things out because the abscesses have been far-flung: first he had a sinus abscess, so that just seemed like maybe a sinus infection gone bad; then he had one on his rear, so that seemed Crohn’s-related—but then he got one on his leg, another on his rear, and then two on his NECK?? and so I think it’s taking awhile to see this as An Abscess Issue as opposed to a collection of random unconnected situations for different specialists to deal with separately.
Anyway, this is the third day in the hospital, and I am very glad that the LAST time we were here, I made a LIST; and also that I resolved that ANY TIME we were here for a check-up on any sort of Concerning Issue I would pack a bag. So I have changes of socks/undies/shirts; I have shampoo and dry shampoo and deodorant and baby wipes; I have books and my laptop; I have chargers for everything; I have (well, had) a giant chocolate bar and a can of Pringles.
It is not happy or comfy to be in a hospital during a Covid peak, but we do not seem to be in a Covid-patient area of the hospital—not, I guess, that I’d know. But the floor is not crowded, I’m not seeing any big warning signs on doors, everyone seems normal and relaxed except that we’re all wearing masks. If you are interested, the rule here is that Edward does not have to wear a mask in his room; I have to wear one if anyone comes into the room but not when it’s just Edward and me; we both have to wear masks anytime we leave our room. Edward was given a Covid test on arrival, and was asked about his vaccination status; I was not tested or asked.
I have found that even my fretful brain is willing to go mostly into Whatcha Gonna Do mode about this. We have to be here. This air is our only option. My brain has instead turned its fretting toward Edward’s Covid booster shot, which is supposed to happen in two days. Probably I should reschedule it. We might not even be home by then. Well, we’ll probably be home by then. But they don’t want to give a vaccination to someone who just had surgery and is on antibiotics, do they? Or do they? Maybe I should give poor Edward a little break between one Medical Thing and the next. But maybe this recent hospital stay shows just how important it is to get him anything that can protect him, and it’s just a booster shot. fret fret fret fret fret fret fret [Update: I asked one of the doctors, and she said it was indeed a balancing act, and that she would give it more thought and get back to us; but that her initial thought is that he should wait until he is done with this infection, for a reason I wouldn’t have expected: it’s because we need to watch him very closely for fever, and if he got a fever from the booster, they would need him to come back to the hospital just in case it was abscess-related.]
There is no aspect of a hospital stay that you have not already heard discussed by every single stand-up comic—but it really is uncanny the way they wake you up just as soon as you go to sleep. Yesterday we had vast stretches of time in the afternoon when no one came in—and then Edward drifted off to sleep, and five minutes later someone came in to check on him. They left; a stretch of time elapsed; he drifted off again—AND SOMEONE CAME IN AGAIN. And yesterday evening, we spent a long time alone waiting to go to bed until after his vitals check, then we got into our beds and turned off the light—and WITHIN A MINUTE, someone came in; and then ten minutes later, SOMEONE ELSE CAME IN. Also, the ENT team does their rounds BEFORE DAWN and it is not my favorite alarm clock, to have six people come into the room and turn on all the lights and start asking questions. I understand there must be reasons for the timing. But.
I am glad you are there with him, I am glad you had the foresight to bring a bag. I am hopeful you are both out of there SOON and that there is a big push by his doctors to figure this out.
Oof. That is a lot of abscesses and a lot of surgeries. I am joining in the hope that there can be collective effort by the various specialists to get this all figured out and start approaching the situation in a preventive manner. I’m impressed by your preparedness – fingers crossed you both get to go home very soon.
Crossing all my fingers and toes they actually figure this out. I’m heartsick for you. <3
As I sit here fretting about a BOMB CYCLONE that we are getting tomorrow…and there’s quite literally NOTHING I can do. And we’re fine, unless we lose power, because America, in its infinite wisdom, decided to connect all heating to the grid and say “off grid heat, why would you ever need that?” BLIZZARDS IN NEW ENGLAND, THAT’S WHEN. I refuse to ever move to a house without a working fireplace/woodstove/whatever. Because I’ve got the rest of it, but am fretting about a power loss.
Anyway, as I fret, I am sending you coping, healing, quick release thoughts. Abscesses sound gross. Yuck. And also, that sounds like a lot of them. And, excellent on you with the bag packing. I would happily send you a replacement large chocolate bar if that made any sort of sense to do (I will still happily send you an assortment of them, for packed bag of the future). I hope it gets figured out. I hope you and Edward are home soon.
To veer off the rails of this topic entirely for distraction and entertainment and I’m too lazy to go into the grocery post. Trader Joe’s. We had been on a grocery store hiatus of sorts since Christmas. We did not want to be in them for a length of time with people. And, see above, barring power outage, I can make due in my house, with current supplies for quite some time. I don’t even need the power (mostly) but I do need the heat. Anyway, we had like one delivery where weird things were out and one pickup, same. But, Trader Joe’s, this week: no blue corn chips, no long pasta noodles (spaghetti, linguini, etc) but loads of short ones. The “just mango” dried mangoes were back in stock, and there were white corn chips (we prefer the blue), and loads of the frito-y chips. And possibly blue corn hard taco shells.
I think we managed everything else on our list. Even the milk chocolate peanut butter cups which were not on the list but maybe my guilty pleasure. So good.
After the tornado in my city a couple of years ago we got a generator powerful enough to hook up to the house where the electricity normally enters, and power our furnace in the winter or our fridge/freezer in the summer, plus things like stove, internet and TV. We haven’t had to use it yet, and it was pricey, but it’s definitely peace of mind.
I have the “we should get a generator” thought maybe once every two years and this is it. Normally, non pandemic, I’m pretty chill about the no electricity portion too. But now, sigh. Really, I want one for heat. Actually, I’d much rather a fireplace and I would even be willing to PACK THE HOUSE for that.
My mom mostly heats with a wood stove. Her house is pretty much power-failure proof in the winter. Water’s the only issue, since she’s in the country and the water gets to the taps from the well using an electric pump. We can cart buckets of water up from the sump hole in the basement to flush the toilets, but we don’t want to drink it, even boiled if we can avoid it.
We have been missing long noodles in our local stores too- but always can order them shipped from target. So we get a $3 item mailed to us with 2-3 day shipping. My husband can’t believe I don’t have more green guilt on this. But I’m just too fried from pandemic and 5 kids – one a toddler- and so I guess I am the exact audience for Greta T to implore to be better.
I am really sorry that Edward is back in the hospital, and you both are dealing with this. It sounds utterly horrible.
Many years ago now, my daughter got MRSA which set off a couple of years of having random abscesses. It was like her body overreacted to ANYTHING. They were not as severe as Edward’s but it was a rotten time. It did resolve and then it was just… in the past. I hope that for him and I hope it SOON.
Hugs hugs and more hugs.
I am so sorry both about the random abscess issue and having to be in the hospital (again). Hoping some progress can be made as to why they keep happening. So smart to make a list and pack a bag, I feel like that’s the kind of thing I’d have to get burned on several times before I made a plan, you crushed it with prep!
Thinking of you and Edward, that’s super anxiety-provoking. I agree that the hospital staff’s ability to detect when you have just fallen asleep is absolutely UNCANNY.
Can the hospital give him the booster?
Hoping that the care team figures out what’s causing the abcesses and gets Edward to a point where this doesn’t happen anymore.
Sorry for Edward. Re: the booster – might that be something they can administer while he’s in the hospital? I ask b/c my husband was hospitalized in October and while he was there, they said they noticed he hadn’t had his flu shot and would he like that taken care of? I realize that COVID boosters may not be in the same category. I just mention it in case you’re concerned about missing the appointment. I understand that you are also concerned about him having so many medical procedures and wanting to give him a break.
We were in the neurology ward for six days. I wore a mask the whole time but if it was just my husband and me, I could take it off. Neither one of us had had our boosters yet and neither one of us caught COVID while we were there. I wish you and Edward well.
Yes! Ask if they recommend it in the hospital!
I’m sorry he’s in the hospital and I hope they can figure out preventative measures (good for you for packing a bag and being prepared!!!!). xoxoxo
I am so sorry that you are both in the hospital and that this keeps happening! Sending wishes for a quick recovery for Edward, preventative thinking from his doctors, and that maybe they can give him his booster while he’s there.
So very smart of you to have thought ahead about the bag.
Wow. I am wishing you both home for some sleep and long stretches of masklessness.
When I was in college, I got a butt abscess, or more precisely an abscess on a pilonidal cyst (NOBODY GOOGLE THAT). It was painful and gross, but I did get to learn who else knew of someone with the Unspeakable Cyst, as well as people who had it worse than me, such as the dorm mate whose father had gotten this variety of Butt Cyst on his honeymoon, so that was gross, and he was a horrible patient, so his wife started the marriage with a serious case of buyer’s remorse. At least you like Edward!
I knew somebody who got this type of thing while his wife was in the hospital giving birth. So that was really fun for all of them.
I know someone whose father in law got this while visiting and couldn’t go home (long plane ride). She had to help care for her FIL who she wasn’t a fan of, was a horrible patient, in a tiny apartment.
Oh, Swistle. I’m so sorry. I glad you have — had — a giant chocolate bar. I had a large abscess that resulted from an appendectomy, and remember that they (and the recovery from them) are. no. fun. I’m so sorry to hear that Edward has had to do this multiple times and hope it will be possible to figure out why and how to make it stop.
One of my parents recently broke a hip and had surgery and needed about a week in the hospital to recover from that and is now in a skilled nursing facility (a good one with good COVID prevention practices, as it happens) and was exposed to a staff member with COVID (details unclear, not likely a long or intense exposure, but …). And as you say — Whatcha Gonna Do?
On the booster — my teen had a day with fever and yucky feelings after his. I wonder if the hospital team and/or Edward’s PCP could offer advice on the merits of having it now(-ish), versus waiting a bit? I write that as someone who is 800 million percent pro-vax and thrilled that we got such good ones so shortly after COVID arrived on the scene, but advice on timing in a situation like the one you’re navigating seems like it might be warranted/helpful.
I hope you and Edward are home soon and that he will recover quickly and fully.
I am impressed with your Bag of Preparedness! As well as your attitude of riding with all the being-in-hospitals things. And of course understand the booster fretting. Maybe ask a doctor or nurse who comes in about whether/when he should get it? I hope the abscess thing gets figured out soon.
I would like a copy of your hospital list. I am always all about being prepared.
I hope things are such as you can go home soon. I think I would be thinking the same as you, that you are stuck with that air, and also perhaps thinking that at least this is someplace where they are taking precautions and it’s not filled with random people breathing on you who probably don’t even think covid is real.
Anyway, I hope it all goes as well as it can and that you are home soon.
Here it is, though it gets changed with time (I’ve removed “child’s lovey” and “child’s blankie,” for example, and added “deodorant for child”):
laptop & charger
phone & charger
back-up phone batteries & cable
books
snacks
little pill container [my purse container where I keep a few benadryl, a few tylenol, etc.]
travel backpack [this is just to remind myself that it’s easier if I carry some of the stuff on my back]
pillow
laundry bag
underwear for me
socks for me
shirts for me
pajama pants for me
CARDIGAN
handkerchiefs
travel bag with train case [travel case already loaded with a bunch of travel-size stuff] and deodorant and hairbrush and toothbrush/paste and face lotion and omeprazole [those are already in the train case but I am paranoid about those particular items so list them twice]
Downy fabric-freshening spray
2-in-1 shampoo/conditioner
bar soap
dry shampoo
pads
baby wipes
washcloth in a baggie
underwear for child
socks for child (one pair for going home – hospital provides slipper socks)
deodorant/hairbrush for child
child’s phone
books for child
child’s retainer / rubber bands
Switch and charger
MASKS
I am intrigued – why are you there with him? It sounds like you too have a bed? I’ve never heard of a non-patient being in the hospital overnight with a patient unless there was a brand new baby involved and even then, here new fathers are discouraged from spending the night and certainly aren’t given anything to sleep on. We bought a camping cot when our first was born and, under the not-too-pleased gaze of some of the nurses, my husband slept on that for the two times we were in the hospital with our new babies.
Children’s hospitals allow parents to stay over with their child. I spent several nights on the uncomfortable couch-bed when my son was in the hospital a few years ago.
Interesting how different it is – our children’s hospital here has couches that “pull out” (extreme air quotes) into a bed – we were not allowed to leave our child alone when he was hospitalized!
Hoo boy, when my sister was little – like maybe 4 of 5? – she had to be hospitalized overnight to get her tonsils out and my mom blithely just brought her in, talked to the doctor, then left and didn’t come back until pickup time the next day. Perhaps a rule like that that here would have prevented the guilt my mom still feels looking back on it 45 years later.
I’m in my mid-thirties and live in the US. I had surgery twice as a kid – once when I was almost two, and once when I was 10. My parents did not stay the night with me, and it seems like they weren’t allowed to. When I was 10, my mom had to wait until visiting hours started at 9:00 before she could come see me.
When my 14 yo had an appendectomy I slept in the room on the pull-out chair/bed thing. Not the most comfortable nights of sleep, but both of us were happier that I was there. This was a US children’s hospital at a university medical system.
Oh! I didn’t think that was unusual! I’m lucky that they provide a bed for the parent instead of a chair, but they expect me to stay—especially since we live so far away. It’s different with a 16-year-old (if I COULDN’T be with him, like if I had crucial job/childcare responsibilities, he could survive here on his own), but, like, the younger kids on this floor need a parent here so that the nurses don’t have to babysit them. (In the maternity ward, I was already the parent staying with the baby, so they discouraged a SECOND parent from staying, though they would have allowed it; a second parent would not be allowed/accommodated here with Edward now.)
I stayed overnight with my husband when he was hospitalized with blood clots. I don’t think it’s uncommon, although this was pre-COVID.
Just to add some context, I’m in Ontario, Canada. I’ve had close relatives and friends stay in the hospital way too often in the last few years and the spouse was never allowed to stay the night. Right now because of the pandemic my friend whose partner was hospitalized for several weeks recently was only allowed to pre-register for an hour-long visit per day and they kicked her out if she tried to stay much longer. In the summer of 2020 my father was in an airplane crash and while he was almost totally unscathed (a no-shit miracle, and I’m not even religious so I don’t usually throw that word around – the man was in a mid-air collision and ended up in his plane upside down in a river and literally only needed a couple of bandaids), they did bring him to the hospital to check him over and my stepmother wasn’t even allowed to enter the hospital to give him clothes to wear home.
I’m not sure what the rules are for kids and parents here though. My kids never had to be admitted and I guess I’ve never thought to ask parents of kids that were what the overnight arrangements were.
Yeah, I don’t know the exact details, but I know visitors for adults have been very restricted during the pandemic (my cousin had to wait in the parking lot after bringing her husband to the emergency room, and after he was admitted was only allowed to talk to him on the phone for the duration of his stay; and of course there are all the stories of family members saying good-bye to dying loved ones over Zoom). I assume the children’s hospital is different because minor children can’t consent to their own care or make decisions for their own care, and medical staff definitely don’t have time to babysit. There are still restrictions (only one parent/guardian per child; parent/guardian must be masked), and I wish there were MORE restrictions (I think the parent/guardian should have to be tested for Covid before coming in), but it seems like a good idea to have parents taking on as much of the burden of child care/supervision/comfort as possible.
Oh my goodness. Here, at least at the woman’s hospital, there is a couch that turns in to bed for new Dad. We had that even when everything went sideways and I recovered on the surgical floor instead of the maternity floor. Dad was definitely encouraged to stay and be with me, even when our stay was 3 weeks. Far from being disgruntled, the nurses seemed to assume he would be there and that he would help me with little things (reaching my water type stuff). I have never needed to be in the children’s hospital with one of my kids, but my belief is there’s also a couch bed there. Every parent I know that has had a kid in the hospital has been with them around the clock.
I’m so sorry Edward has had to deal with this! And you, too. It’s no small amount of stress — hope you’re being, and will continue to be, very gentle with yourself. <3
Among my worst (but also, in my mama bear heart/lizard brain…best) parenting moments was with my RSV baby in the hospital, and he was so tired, and the stupid loud doctors and nurses kept waking him when he was doing fine and just needed to SLEEP, and they wouldn’t leave him alone, and I finally just lost it and THREW A PACIFIER at the nurse who (in my mind) very condescendingly asked if we had tried giving baby a pacifier?! NO YOU WHORE I NEVER THOUGHT OF THAT IT COULDNT POSSIBLY BE THAT YOU KEEP BOTHERING HIM WHEN HIS OXYGEN LEVELS ARE GREAT AND HE IS JUST SO FUCKING EXHAUSTED
I feel your pain in my own way, is what I am saying, and I hope this all gets resolved for Edward ASAP.
Oh Swistle, I’m so sorry. Doesn’t it seem surreal to be grateful that you’re in the hospital but not, you know, the really Covid-y part? How terrible for you and Edward that this keeps happening. When my dad was in the hospital last fall no one was vaccinated yet so even non-Covidy hospital was pretty tense, but that was my dad, not my child. I do remember when Angus broke his femur at two years old, the absolute rage when people kept waking him up, when he was in traction or a body cast and it was so hard for him to fall asleep. It’s such a terrible feeling and I wish I could help.
I am so sorry that this is your current situation, although I am extremely glad you had a packed bag. Such an improvement, I’m sure. Sending good thoughts to you both. I hope they can get a clue on the abscess situation.
I spent 30 days in the hospital once and they had to take blood every 4 days to be sure they hadn’t given me any bloodborne diseases (because I was admitted, where else would I have gotten one) and once I had a nurse come in my room at 5am, flip on the light directly above my sleeping face, and take blood out of the back of my hand. Just, WHAT. She was the most unpleasant nurse I had the entire stay, and also the ONLY one I had two nights in a row.
Hope Edward is feeling better. Do you guys have specific games/things you do to pass the time while in the hospital? Or are you just kinda doing your own thing?
A few years back I was in the hospital (VERY DRAMATIC REASON) and I had to check myself out because THEY WOULDN’T LET ME SLEEP. How was I supposed to get better if I’m exhausted??
Take care!
We mostly do our own thing, but we tend to read funny internet things aloud to each other, or maybe someone will read something interesting and mention it to the other one, and we both do Wordle and then discuss. I’m also providing some moral support for some homework he has to catch up on.
Ah nuts. I’m so sorry. Fingers crossed and golden light on both of you.
Oh my, poor Edward, poor Swistle! He’s very lucky to have you there to make him comfortable- good on you for thinking ahead and packing a bag. It is so frustrating, though, how much of this is on the patients and their families to manage.
As for the pandemic, I too have reached the “meh” stage of coping. Still masking, yes, but resentfully. It didn’t have to be like this. And my kids- they are in school, which is GOOD, but I haven’t been able to get them better masks, which is BAD (and the younger one is too young to get vaccinated). So they are wearing cloth masks upgraded with nonwoven filter material, and I’m trying to forget everything my husband (an engineer who knows about fluid mechanics and does not know when to shut up) said about how air will always take the easiest path, ie, around the filter. Calming, deep breaths (in my own house and air).
Oh hell. Swistle, I’m so sorry. I hope he recovers quickly and that you are released soon.
I’ve had two babies stay in the NICU. The first time they sent me home but let me stay in an empty hospital room one night I needed to be there. The second time the baby had it’s own room with a bed- they seemed to want me to stay. However after the first night where I slept maybe 30 minutes total I took a cab home. I was so tired I was nauseous and had blurry vision. Someone walked in the room every hour – even though every possible metric was being measured electronically and they could see it from their station. Plus there was a camera and a window so they could see the stinkin baby without coming in. Why did they have to walk in and turn on the lights to check what they could see from the hallway? The baby didn’t care because he had on an eye mask that made it dark. I thought I was going to die if I didn’t get sleep soon.
Deepest sympathies to the whole situation and I very much feel you on the horribleness that is trying to sleep in a hospital. I had my first baby in a hospital and while the birth was fine, the complete lack of sleep post-birth was so awful I swore I wouldn’t have another baby in a hospital unless I absolutely had to. And I didn’t. I had three more kids that were born either at home or in a birth center.
Oh no! So sorry you’re dealing with this. Fingers very crossed for quick resolution of the recurring problem (I had surgery on an eyelid abcess once and it was *not* nice) and of the booster logistics.
I send you many fortifying vibes from Ireland.
I’m sorry you and Edward are going through all this. I hope they can figure out what’s causing it.
It reminded me so strongly of summer of 2020 when North was hospitalized three times: the covid precautions, sleeping on a bench in the room, constantly being woken at odd hours.
Thinking of you. Sending hugs and healing thoughts. Take care,