Hello, still from the hospital! This morning when a crew came into the room at 6:30, it sounded as if I might not even have enough time to zip downstairs and acquire a coffee before they’d be whisking Edward away for a second CT scan and then a second surgery. (A nurse told us last night she’d been told to have him stop eating/drinking at midnight, which was our first clue that something might be happening today.) I fairly FLEW for the coffee, then flew back, panting. At around noon, they finally came to get him for the CT scan. We have become familiar over the years with the concept of Hospital Time: things happen when they happen, and not when anyone says they’re going to happen, and the term “soon” means “in the future, that’s all we can say”—but it still fools me from time to time.
What I should have done was race down to get some lunch right after the CT scan, since we knew it would HAVE to take at least a certain minimum amount of time before the results could be evaluated/communicated—but I didn’t think of it. I was still in foolish Poised For Action mode, plus I wanted to update family members. Then it was 2:00 and I hadn’t had lunch, but now it really did seem as if any minute the doctor might come in and want to talk about the CT scan and discuss surgery options, so I didn’t feel I could go.
The ENT doctor/surgeon came in around 3:30 and talked about how things were kind of inconclusive, and that one option was to send us home and have us come back Thursday—so we could at least get a couple of normal nights of sleep. He said he would go talk to Infectious Disease (that’s the department handling the antibiotics, and they decide when it’s okay to switch from IV antibiotics to oral ones) and get back to us. He left, and about ten minutes later the Infectious Disease doctor came in to talk to us, and we told her the ENT surgeon was looking for her, and right around the time she was done talking to us her pager went off and it was the ENT surgeon, and she said she would go talk to him. It is now 7:00 p.m. and no one has come back. I guess we are staying another night? The nurse did come in and say Edward could eat and drink again, so in any case we know surgery is not imminent; he had a nice big dinner and is feeling a lot cheerier.
There are several things that would vastly improve The Hospital Experience for me. One of them is not even something I’d waste a wish on, which is that I would love it if things happened when people said they were going to happen—but I know that is not possible/realistic. I think the more realistic wish (not that I will get this wish, either) would be to NOT HAVE the consistently-wrong predictions. I remember when I worked at a pharmacy, I would start adjusting the time I told people the prescription would be ready, as prescriptions piled up: so, like, if we only had one prescription to fill, I’d say it would be 10-15 minutes (and often we could do it quicker than that); but once we had half a dozen prescriptions, all for people who wanted to wait for them instead of coming back later, I would be saying 30-40 minutes; and if we hit more like 10-12 waiting prescriptions, I would say I was afraid we were rather backed up and it would be about an hour. My boss did not like that, and wanted me to say 10-15 minutes to everyone. But I know for myself, the absolute WORST is to be told 10-15 minutes and have it be an hour! That’s the WORST! If I KNOW it’s going to be an hour, I can choose to come back later! If I am TOLD it will be 10-15 minutes, I will notice and count and resent EVERY SINGLE EXTRA MINUTE! And my BOSS was not the one who would have to deal with those absolutely-justified noticing/counting/resenting people!
Where was I? Oh, yes. So I would not even think to try to fix Hospital Time, because obviously there are always going to be things that take longer than expected, and emergencies that have to be dealt with, and unexpected complications, and so forth; and it is in everyone’s best interest for doctors and other medical professionals to take the time things NEED, and to take care of situations in THE ORDER THAT MAKES THE MOST SENSE. But I WOULD enjoy it if people didn’t make predictions when they KNOW, FAR BETTER THAN I DO, how unreliable those predictions end up being. I feel like a lot of hospital people are like my boss at the pharmacy telling everyone it will be 10-15 minutes even when they know it’s going to be an hour, and that’s not good for anyone. (There ARE some hospital people who will say things like “They say 2:00, but–*HUGE SHRUG*–you know how these things go. We’ll just see!” I love them.) (Their bosses probably tsk at them.)
The second thing that would vastly improve The Hospital Experience for me would be having one or two times per day when I could be assured that no one was going to come in with anything important. If I just knew that between 11:00 and noon, or 1:00 and 2:00, or 9:00 and 10:00 at night, NO DOCTOR WOULD COME IN, then I would know when to take a shower, or run downstairs for coffee, or go for a little walk, or use the bathroom. Just as it is comically uncanny how people in a hospital will come into the room the minute you doze off, it is comically uncanny how we will be in the room for hours and hours and hours undisturbed, and then I will go downstairs to get a coffee, and when I come back 10 minutes later Edward tells me the doctor was there while I was gone. (The doctor, probably: “Nurse, please page me when The Mother leaves the room.”) Or I finally decide I will risk a shower, and I am undressing in the bathroom and I hear a knock at the room door and then I hear the doctor’s voice. For heaven’s sake, what is a person to do?? Just tell me even HALF AN HOUR A DAY when I can COUNT ON being unmissed. Right now, in fact, I would like to take a shower, since evenings in general seem less busy/doctory than mornings. But sometimes a doctor comes to see us after handling their last surgery of the day. When is it definitely safe to take a shower? After 9:00 p.m.? After 10:00 p.m.?
The third thing that would vastly improve The Hospital Experience for me would be if someone came through each day and checked on supplies, just automatically, perhaps when they came to collect the trash. I hate having to tell A REGISTERED NURSE that we need more toilet paper, as if I think she is our personal servant. And you were all SO helpful last time I was here and was afraid to ask about towels, but I was STILL AFRAID AGAIN TO ASK ABOUT TOWELS. (Partly because I wasn’t sure if Covid restrictions might apply to the showers, but mostly because I am as ever a wee sleekit cowrin tim’rous beastie.) I wish there were towels already in the room, and also sheets so I could change Edward’s bed when the medication makes him all sweaty, and really I just wish I had access to all relevant supplies so I could do my own fussing/housework and didn’t feel like I was constantly asking for things / asking for people to do things. I know it’s NOT like this, but it FEELS like I am snapping my fingers and demanding room service. I was so happy and relieved when I realized that I could take our finished meal trays out to a cart in the hall, instead of the nurses having to do it for us. Surely there are other things like that that I could be doing if I only knew! But I think for most of the things I just CAN’T: I don’t have access to the sheets or the towels or the toilet paper.
The fourth thing that would vastly etc. etc. would be a good gift shop. Our local hospital is not anywhere near as well ranked as this city hospital, and they do not specialize in children (they’ll take out children’s tonsils or set their broken bones, but as soon as Edward needed a more extensive procedure they sent us here), but they have (or used to have—I haven’t been there since Elizabeth got her tonsils out, and that must be about a decade ago now) a really good gift shop. They have the expected stuffed animals and toys and cards and flowers, but also it’s like a small drug store: they have over-the-counter medications, pads and tampons, a small section of socks and underwear. Here, I have to leave the hospital and walk to a drug store, which does not sound so bad when I type it out, but I am not a city mouse and would prefer to stay tucked into the hospital—especially now, when there are screening stations to navigate at the entrances.
And the final thing is that I would love to be able to order Edward’s meal trays ONLINE. I have to use the phone every single time, and I would say 9 out of 10 times I get someone brusque who sounds like they hate their job, and often it’s someone who is pointlessly trying to correct the way I’m ordering (“No, ketchup is a condiment, tell me that at the very end”), when their colleagues have corrected me the other way (“Hamburger, okay—you want ketchup or mustard or anything with that? And fries, okay—you want salt and ketchup with those?”). And why correct ANYONE, when most of us are merely passing through and no one will be long-served by these educational efforts, and it will only frustrate the employees who will feel as if they SAY it and SAY it and no one EVER LEARNS?
Just wishing I could send you a big hug. Reading your words, I feel as though I am back in the hospital with my newborn when she had a failure to thrive hiccup after coming home initially. (She is fine now, praise be.) I’m so sorry you’re still there, dealing with this, and worrying about your sick kiddo.
Swistle, I cannot BELIEVE you are still there, and I sincerely hope that you have found a pocket of time to get showered. May tomorrow bring answers and your own bed!
I don’t have a ton of hospital experience, but when I was in unmedicated labor with my first in 2003, at some point I heard a nurse say, “oh, this baby will be here before midnight!” Let’s say it was 11 pm or so at the time. Do you know what time he was born?? 1:24 a.m.!! For the love of god, do not tell a first-time, natural laboring momma that her baby will be born in less than an hour unless said baby is halfway out!!
Anyway. Thanks for giving me a forum for that story. And, I do like his birthday better — the 14th of the month as opposed to the 13th, so there’s that! All the best to you and Edward.
Ha, I had the opposite experience in labor with my third (but first unmedicated). I was so discouraged when the nurse checked me at 5 cm and told me it would take another 5 hours to get to 10 (one hour per cm)! I was dying! Turned out to be about an hour or so instead. Maybe a situation where it’s better not to over- or under-promise and just say nothing. :)
Swistle, I sincerely hope Edward’s medical issues are resolved soon and you both can head home.
I have several related stories and I will try to remember to type them all because I know it is nice to have things to read while stuck in the hospital.
Re: time it takes to do things in the hospital. Ryan was born at 6:00pm exactly and the doctor wanted me to go home twenty four hours later. I said absolutely not, I will not be leaving the hospital at four in the morning with a newborn, if you cannot start discharging me until 6:00pm, you will not have me out of there until the wee hours of the morning. I insisted on starting the discharge procedures the next morning and the doctor who insisted he could absolutely get me out “really quickly” discharged me at 7pm that night. It took twelve hours.
Re: supplies. YES. YES. I started asking the nurses to bring me extras of everything whenever I asked them because I hated having to bother them. I had a photographer come in to take pictures of the baby (the hospital affiliated one) and she said “oh, I’m going to go grab a white sheet for backgrounds from the linen closet” and I asked HER to get me clean gowns while she was in there. (And that magnificent woman brought me three because she understood.)
Re: waiting and waiting and finally doing the thing and that is when they come in. Ryan was getting his second covid shot and since he’s in the trial and all the paperwork and related stuff is involved, each appointment takes hours upon hours. We had finished the testing and the paperwork and had been waiting for the shot guy to come give the shot for an hour. I took Alex to the bathroom for TWO MINUTES, NEXT DOOR and that is when he came. Luckily Ryan is totally chill about shots after all this so they just did it while I was gone. Elizabeth took his picture for me. I came back (TWO MINUTES LATER) and they were all “done, mom!”
Oh, I so agree with you on the timing thing!!! I do taxes, and I try really hard to let people know what to expect. If they get me their stuff on March 1, it’s probably going to be about three weeks, so I tell them four, and then they’re happy when it’s sooner. I can’t imagine saying one week (like it is now) and then taking three. I would never go back to someone who did that to me.
I very much hope the two of you are home in your own beds very soon!
100% agree on the good gift shops! It makes such a difference if you can good candy and snacks etc! I would not want to leave the hospital either since it’s winter and you are bound to miss a minimum of 2 important doctor conversations if you ventured out!
When I was in the hospital after having my baby, I felt bad asking the nurses to clear my food trays, but there was no one else who could do it. And I waited all day for someone to come empty the overflowing bathroom garbage can, and of course they came while I was taking a shower.
The ability of doctors to come in when I’m gone is uncanny. Docs almost always ‘’round’ early. I’ll say you’re getting good practice for when you have to navigate this with elderly parents. It’s helpful to be able to politely and repeatedly tell staff no. No, you won’t be doing another blood pressure check. No. No. No.
Almost 10 years ago, my spouse had a nine-day hospital stay. I couldn’t sleep at home the first night so I camped out in his room. I happened upon a hall closet full of towels and whatnot–I think it was right across from our room–and asked permission to help myself, and that was one less thing we had to bug the nurses and assistants for. I wonder if that would even be possible nowadays.
Good luck! I’m so sorry Edward is going through all this and hope you two are out of there for good very soon!
Yes! I don’t know the restrictions now, but during my one hospital stay my particular room actually had a door inside it to the linen closet (which also opened onto the hall, if that makes sense). So I could grab my own towel and pillow cases and such. it was great. Now, I did have to have a nurse come in and somehow cover over my IV port so I could shower (there were multiple ways this got accomplished, and I always found it comical). But. Small victories.
Swistle I am so sorry you are still stuck there and I’m sending warm thoughts for swift recovery, getting to go home soon, and finding home a comforting place not full of dust bunnies and dirty dishes.
I work in a hospital (rehab) and all the kiddos who are there for long enough we set a schedule for. Ask the nurses if you can block off a half hour every day for shower and coffee run! Our nurses do it all the time – note on door that says “check with nurse before entering” or what have you. “Do not enter from 9-930, 12-1230” etc.
Your boss was WRONG and you were RIGHT. I would much, much rather drop off a prescription and COME BACK rather than wait, wait, wait. I’d always rather have the longer prediction and then be pleasantly surprised when it was earlier than normal.
I would be 100% the same as you, wanting to shower etc. but not wanting to miss the doctor.
Good luck and I hope they figure things out so you can go home (and not have to come back!).
I said this already, but this is really bringing back memories of when North was in the hospital two summers ago.
I hope you get to go home soon, or get the surgery quickly, whichever you want.
I was with my daughter at a children’s hospital for a month, and I just called once a day to order food and put in her lunch, dinner, and breakfast the next morning orders all at once. Everyone was really nice about taking the order and seemed to prefer it over being called three times. We were on the oncology floor, so maybe that makes a difference. I sympathize with all your other issues. At the hospital we were at we could always count on not being disturbed during shift change time 7-7:30 am and pm. And in the morning the doctors and nurses never came in before 8 unless there was a good reason like she needed a blood transfusion, so I always knew I could take a shower then.
This! Find out when shift change occurs. I work at a nursing home, and my shift is 6 a.m. til 2 p.m. Between 6 and 6:30, and between 2 and 2:30, we aren’t doing anything patient related. We’re giving report to the incoming staff, finishing up our charts, gossiping, etc. Talk to your nurses and find out when they switch off, and you should be able to get things done during that time.
Has no one (your BOSS) heard of under-promising and over-delivering?!?!?!
This all sounds like A Lot. But the constant meal-related phone calls, and irritation from the meal order taker, and the instructions that don’t follow from person to to person — OMG.
Hoping that you get out of there SOON, or, barring that, you get some new infusion of books.
The very phrase that was running though my head as I read.
I am a total pessimist, and if you lead with the worst-case scenario, I will not be upset. I will take comfort in the affirmation of my world view. If it builds in a cushion that takes the pressure off the people doing the actual work, so much the better.
I’m thirding this.
I can’t believe in the world how many people over-promise and under-deliver. If you think it will take 5 hours, tell ’em 7. If you think 15 minutes, say 1/2 hour. No one gets upset at early delivery and nearly everyone gets upset at a missed deadline.
My mechanic is a total over-promiser. The upside is then he feels bad and doesn’t charge me for a lot. The downside is it takes FOREVER to get my car(s) done.
And, Swistle. I love these updates. I hate that you have to be in the situation to give them. I hope all gets figured out soon. It all sounds scary, gross, and tedious. But, through you and the comments, I’m so prepared if I ever have to do something similar and I thank you.
I’m about to fly my geek flag: I recall when Scotty showed up Star Trek TNG and there was an emergency that required a job to be done in engineering and the Geordi and he had the following discussion…
G: “I told the captain I would have this diagnostic done in an hour.”
S: “And how long will it really take you?”
G: “An hour!”
S: “Oh, you didn’t tell him how long it would really take, did you?”
G: “Of course I did.”
S: “Oh, laddie, you have a lot to learn if you want people to think of you as a miracle worker.”
re: coming in when you aren’t there – YES. My Dad was in the hospital 5 times this past year and my Mom once. They were both a little addled because of their illnesses so we would TRY to have someone there so we would know what was going on. I would be hanging around forever (being a 2nd illegal person in a room), then get kicked out, and then all the doctors would show up. And while Parent 1 was in the hospital and Parent 2 was visiting (and vice versa), they were both terrible at remembering ALL THE THINGS and DETAILS about what was really going on.
re: the phone – I think overall for older patients the phone is easiest; they don’t have their glasses or contacts so they can barely see anyway, and they’re used to the phone. Only time it was a problem was when my Dad was super addled and forgot things like what a fork was and everyone’s names. That only lasted a day but wow that was weird.
also: Big hugs to you and Edward, and hoping all is well soon!
My older daughter spent a week in the hospital on the GI floor (ulcerative colitis) when she was 14 and one thing that struck me was that the meals were absolutely not appropriate for GI patients. She is on a very restricted diet and yet they brought her milk (no dairy!), Coke (no carbonation and also COKE? For a hospital patient?!), pudding (no dairy!), and various other things she couldn’t eat.
I ended up having to go out and buy her meals, which was thing #2 that struck me: we were financially able to buy all her meals and mine/my husband’s for the week that we were there, but I saw a number of families that were unable to afford that. In fact, there were a lot of children there who were alone most of the time because their parents had to work. It made me so sad, and I think about that a lot and wish there was something I could do about it.
YES. The last time we were here, guest trays were not permitted so I had to buy food for myself during our stay (this time guest trays ARE permitted, and I am grateful); and a couple of times this time, the trays have not arrived due to some mix-up, and then the kitchen has been closed so they couldn’t be replaced. I have felt EXTREMELY AWARE of my ability to run downstairs and spend money for food at the little take-out place there (and it is not super cheap—like, $8 for a grilled cheese sandwich, $2 for a milk, $1.50 for a single-serve bag of chips), and have wondered what happens with people who can’t comfortably do that.
And the kids whose parents can’t be here, YES. Like, I am just sitting here with a 16-year-old! I would be perfectly happy to go hang out and read books to someone for awhile! But…there isn’t a system for that, and I do understand why, and yet it feels unhappy to have resources available and need available and not be able to pair those up.
I did volunteer for a while with a pediatric GI advocacy group, and once a month we would take a big breakfast spread to the GI floor of the children’s hospital as a way to mitigate those issues. But it was a very small band-aid on a very large problem.
I noted the same thing at the hospital at which I had my second c-section: I wasn’t supposed to drink anything carbonated, or anything through a straw, or any caffeine, but all my meals showed up with cans of gingerale, straws, and coffee.
It was extra-noticeable because I’d had my first c-section at a different hospital that tailored the nutrition in the maternity ward.
Something to try: when my husband spent a few days in the hospital post-surgery last year I discovered that the supply closets (sheets, towel, swabs, tissues) were near the closest nurses station. So when we needed something I would walk down there and ask and after awhile they knew me and would just point at the closet and I could get it myself! Made me feel better because instead of calling them all the time when we ran out of things I could just handle it:).
I am a pediatrician who only works in outpatient now, and part of the reason I chose this field is because during residency, I HATED all these things about the hospital that you listed. You’d think, from spending time as an employee at a hospital, that maybe I’d have some secret tips, but no, just a “yup that’s the way it is. ::shrug:: Nothing gets done fast and doctors/nurses always have terrible timing for entering the patients’ rooms!” Though maybe one tip would be that if there are any residents at your hospital, definitely don’t ask them for a blanket or to stop your IV machine from beeping. Some of them might like to help, but we are completely inept from that standpoint.
As a patient when I delivered my baby, I was so annoyed we couldn’t order our meals online! we were often on hold forever! How antiquated a system!
When my mom who had dementia stayed in the hospital for long periods I would often stay in 8-10 hour shifts. What a glorious day when the internist and the neurologist showed up at the same time and had a five minute conversation that otherwise would have taken a day or so of back and forth to get through! I remember it vividly because it happened exactly once.
I also remember being hungry and picking at the remains of my mom’s tray and a nurse coming in threatening to charge me $100!
It’s no fun waiting around the hospital (the smell alone ugh) and I hope you guys get to go home soon.
I’ve been lucky enough to only spend one night in a hospital with a child, and it was pre-covid, but the same things drove me mad. I hated having to ask the nurses for everything when surely they had better things to do than tell me which was the light switch (there were switches everywhere! None of them labelled!) and find me a bedsheet (someone showed me where the pull-down bed was but it was a bare mattress). And it was after a planned afternoon surgery, and I wasn’t sure when to say goodnight and let her sleep – then five minutes after I’d tucked her in and she was sleeping soundly, the doctor came round to check her. Luckily it was just one night. That was at Great Ormond Street Hospital, which is an NHS children’s hospital, and I remember ordering her meals by ticking options on a sheet, but I can’t remember what I ate. I think I just took a bunch of snacks. The actual care was first rate but I felt so awkward the whole time.
When stuff is quietest on the ward, ask the desk nurse if you can get extras of everything so you can make their lives easier by handling Edward’s sheets yourself, etc, and while you’re there, ask if you can reliably get a particular half hour in the morning and in the evening to do things like a coffee run and a shower. They will most likely appreciate the question.
You are so right about adjusting the time. A few months ago I picked up a prescription the doctor had just sent in. The pharmacy tech told me they just got a bunch to fill, plus a number of walk-in vaccinations. She said it might be 30-40 minutes. I looked around; the place was crowded and more people were coming in. I cheerily told her I would come back in 2 hours. She was visibly relieved.
When I was in the hospital to give birth, I hated having to ask the nurses for anything. They all seem so busy and surely they have better things to do than explain how to adjust the temperature in my room or clean up the juice I spilled on the floor, even if I’m freezing and can’t bend over. And it did feel really weird calling in my meal orders. I wish they had a different procedure for that.
I second? Fourth? Sixth? That you can ask for a “do not disturb” window (for showering/erranding etc). I think children’s hospitals especially must be more used to this, once we realized about a week into Felix’s hospital stay that this was an option, it was much more helpful.
Everything else: UGH. YES. “He needs a procedure first thing in the morning so no food after midnight!” Procedure happens at 3:30p the next day. Argh / ugh / argh again.
Ugh. Ugggggghhhhhhhh. I don’t even know what to say. Oh – I feel dumb for asking this, but why would your boss not want you to be realistic about the time for filling a prescription? Did he WANT to piss off the customers? I never wait for my prescriptions just because I know how awful I am at waiting and I never believe them when they say only 10-15 minutes. At the most I go run other errands and come back in an hour. I just feel so wretched for you.
Right? I think of the days I would run for a prescription with a 4 year old and a 1 year old and an infant. Generally bc one of them was sick and my husband was working 70 or 80 hours a week. If you told me 15 minutes, but it was actually an hour? I would so rage filled, I’d combust.
I’m fascinated that you call in your meal orders. I’ve only been in public hospitals in Australia (for me and for kids) but every time we’ve had a paper form to tick. Just as low-tech and perhaps riskier.
I hear you about the hospital problems. I know nurses and doctors have to do things when they have to do them. But a little bit of wiggle room would be nice! When I was in getting my gall bladder removed, they told me that my surgery would be in the afternoon – and it got pushed back a couple times, which was frustrating as I could’ve eaten later the night before, but understandable.
Then when they arrived, I had about 30 seconds notice. I would’ve liked to pee. I needed to ask a nurse to lock away my mobile phone. I don’t know why they couldn’t’ve told me ‘you have five minutes to pee’ or ‘you’re definitely next, it’ll be 10-20 minutes unless there’s an emergency’. And I would’ve understood if there had been an emergency!
Still much better than the times I’ve been with a kid in the hospital. (My kids are all fine now.) I’m glad that Edward is at least 16 and understands what’s going on and doesn’t need to be persuaded to sit still.
It’s the not knowing which is hard, isn’t it. I mean, it’s boring as anything to be stuck in a room all day every day anyway, but if you knew at least what your schedule would be, you could relax to some extent. When you don’t know when you’ll be interrupted, everything’s harder. I feel for you both.
I’m just getting caught up and I truly hope and pray that you are all back home now. What an ordeal!