My wife has been in the hospital regularly over the past 18 months probably 20 days total. This is a renowned research hospital with a gorgeous, vibrant facility and spacious rooms.
They absolutely 100% ignore any semblance of a sleep cycle for their patients (as well as proper nutrition but that's for another day). Constant interruptions to check vitals, ask if we want to pick a meal, beeping infusion pumps, a whole squad going on rounds with banal questions...it seems to never end.
I'd like to find a watch/fitbit for her and either find or write an app that just fills the screen with a color based on her current sleep phase...green she's awake, yellow light sleep and red means she's in REM or deep sleep and should not be disturbed unless necessary. Place that by the door so the nurses can see and hopefully adjust their timing accordingly.
Have you had a conversation to address concerns about your spouse’s care? There is always some flexibility around the care that she’d be receiving, and one core component to that is your rational/measured input, either in person or by phone. Framing your concern as rational helps immensely in establishing a dialogue with care staff. It sounds like your core problem is that you want to be bothered less.
Nurses are not there to make every patient's stay miserable. At least in my practice setting, we are extraordinarily receptive to suggestions around care and stepping in as informal advocates when families are not available.
We ran into this with my daughter who needed multiple surgeries. Two different experiences in two different hospitals.
First hospital was world renowned, ranked #1 in the world for the category of care she needed. This hospital seemed to spend all their money on what I would call “celebrity surgeons”. World renowned, only the best. I suspect the side effect is that they spent much less money on nursing care. There was only one or two nurses to a single floor overnight, and they utilized nursing assistants for everything. I got lots of attitude from the nurses, I suspect it was part of the culture. Their schedules were also much more rigid since they had a lot more patients to cover with limited resources. They also seemed to focus a lot more on the raw numbers and not the individuals. We fought tooth and nail to get a schedule that worked, and got a small amount of wiggle room, but it took a lot of work.
Second hospital was a completely different experience. They had a good surgeon, who had good outcomes, but didn’t have as many surgeries under his belt, so less data. I suspect this meant he took up less of the budget. This hospital had zero nursing assistants, and each nurse only had one or two patients at any given time. This resulted in the nurses advocating for us, and actually working their schedule around us.
Our daughter was in for surgery at a world renowned hospital #1 for what she needed ... and our experience was like your second example. After she moved to the step-down unit from the ICU, she had the same day nurse for the next three days and the same night nurse for four, as well as a consistent overnight NP throughout. We had a private room with a separate vestibule containing a washing station & laundry bin for scrubs/aprons. Also in the room was a whiteboard where the current nurse always wrote the intended schedule and reviewed it with us at the start of their shift. Our room had a single-bed sized sofa and a fold-out chair. It was quiet, and except when we had to wake our daughter for overnight oral meds, the nurses let her sleep. To be honest, while it was a hugely stressful situation, I'm convinced the hospital recovery environment and staff played an enormous role in our daughter being able to be discharged only 4 days after open heart surgery.
That sounds almost exactly like the hospital we were at (Rainbow Babies, for the record). Hope your daughter is doing good, my daughter is also a heart baby -- coarctation and bicuspid valve.
The nurses have been stellar and I’m sure would try to accomodate, but they would actually have to guard the room against all the other ramblers to gain a net benefit.
> I'd like to find a watch/fitbit for her and either find or write an app that just fills the screen with a color based on her current sleep phase...
Related to this: I looked into trying to get real time sleep data found it surprisingly hard. Fitbit, for example, only makes sleep data available after sleeping is over and the device is synced to the cloud. If anyone has a good solution to this I'm all ears.
An accelerometer based approach (which the fitbit uses) can't actually tell the difference between someone who is just lying there still and someone who is in deep sleep.
All it can do is measure movement (which might mean they are awake, or it might mean they are in REM) and no movement.
Then it can post-process it later and use the length of stillness and the patterns/amount of movement to infer probable sleep cycles.
I don't think it's possible to get real-time sleep phase data without proper EEG sensors to measure brainwaves.
Hi. I work at Fitbit. I don't speak for Fitbit, but the page below does. You are probably right that real time sleep phase data would require EEG, but wrong about Fitbit using motion data to infer sleep phases. Without heart rate Fitbit only measures awake/restless/asleep. REM/deep/light is estimated only when heart rate data is available.
A proper EEG for use in sleep studies is available on ebay (last time I looked, maybe six months to a year ago) for $1000 for a USB model or $1500 for one with a battery (might require a prescription). There are also ongoing costs, since the standard usage is to stick the electrodes to a particular location and I'm not sure how accurate it would be if you didn't do that (it is possible that some of the long term EEG monitoring caps used for epilepsy might work with less setup time, but I don't know if it would be directly comparable to the usual method). IIRC, it takes about a half hour to get set up for a sleep study. Additionally, scoring the sleep study is not a fully automated process and without the same training that sleep doctors receive the results would not be comparable. Getting a reliable and useful result might be quite difficult and you would need to compare with regular sleep studies to see how accurate a particular method is.
There seem to be an endless stream of companies trying to make easier to use EEGs, either for clinical or home use, and it seems like almost all of them go bankrupt in a few years. I suspect most of them are also not very accurate. A couple of years ago I saw an interesting one that tried to automate most of the scoring but would send the more difficult cases for human scoring. I'd guess that one at least has a better chance of reasonable accuracy than most. I think it was dreem (dreem.com), although they only mention automated scoring at this point. Possibly they managed to train their automated system sufficiently or maybe it was a different company. In any case, I would be suspicious of claims that they are as accurate as a sleep study, although it is certainly possible that someone has come up with an actually accurate method. You would still be spending hundreds of dollars for a device that sends all the data it collects into the cloud and in most cases will be useless if the company goes out of business or decides to stop supporting older products. They usually aren't clear about what, if anything, will still work if the company goes out of business.
Of course, less than ideal results can still be interesting. Once a few years ago I managed to set up my laptop's microphone to record might sleep at just the right level and it was very interesting. Unfortunately, I didn't write down how I changed the settings to get the right volume and could reproduce it when I tried a couple of times, although I imaging there are online guides for this type of thing and I didn't go looking for them. For anyone who sleeps alone and does not use CPAP I'd recommend giving it a try. With builtin laptop speakers you can only hear when sleeping on one side (I never sleep on my back, so not sure if that would be covered), but I bet it wouldn't be too hard to set up two or three microphones to get a good recording in any position. It isn't trivial to review, but looking at the recording in audacity it is possible to see the regular parts and just listen to the less regular parts. You can't even fully tell asleep or not from that, but you can notice when your breathing changes and in my case it was very interesting to see how that often happened due to quiet noises (e.g. a dog barking in the distance, car going by quietly). You can also tell how often you move at night (about every 45 minutes in my case, at least that night).
I've also used a basic pulse oximiter (Contec CMS-50I, was about $90 new on ebay) with the Sleepyhead software. It has pulse, SpO2, and perfusion index. At quick count it looks like I've used it 24 nights over the past couple years and I'm not sure the device will necessarily last much longer, hopefully it will (the display has an always on line and there are sometimes issues with the sensor that might be due to an issue in the cord, although it is sometimes due to not being cleaned sufficiently or to my hand moving in the sensor; the sensor can be replaced for something like $20 and it came with a second "one time use" sensor that I haven't tried but I suspect might be possible to use more than once). The pulse reading seems to accurately show when I first get to sleep, but doesn't help determine when I am sleeping for the rest of the night. SpO2 is the main thing I use it for, but doesn't help determine anything about sleep. Perfusion index mostly seems to indicate how warm my hand is and so can sometimes indicate when I change position.
Yup. Been there, done that. I had to get rather obstreperous with the nurses to make them leave me alone as much as possible, so that I could get sleep.
I also had 32db NRR earplugs that I take with me everywhere (my hearing can be very sensitive), and I used those extensively.
I got lucky and I wasn’t in the hospital for long. Once I got home, I could sleep as much as I needed.
Unfortunately sleep phase detection is not real time, even assuming you could get staff to pay attention to it. If you can get the hospital to care about sleep though, maybe they could start coordinating enough to consolidate wakings.
Waking anyone uncaringly, insensitively, etc (too hard, too early) was the absolute worst sin in my mother's book, and mine too.
In a way, it shows how powerful someone is, that they could take something so valuable from another with almost no effort, and yet so lost if they would do so.
> a whole squad going on rounds with banal questions
I’m sure there’s a better way, but that’s par for the course for a research/teaching hospital. The patient’s room is a real-life classroom and lab, with everything that goes along with that.
If you need help developing the app, let me know! I do iOS and Android development so maybe I can help a bit. I haven’t worked in the sleep cycle field but we can figure out things maybe.
Hey that's extremely generous of you...thank you! It will probably take some time as I'm looking at various bits of hardware to experiment with, but if I get stuck I very well may reach out to see if you have a few cycles to assist. Much appreciated!
Also throwing my name in the hat if you want an extra hand on the Android development part! It seems like such a great solution to a problem that occurs all too often
Any time my wife tried to sleep in her last hospital stay, the attached vital checkers got jostled and started beeping. She is used to sleeping in a reclined position and sleeps easily. I have no idea how a less-easy sleeper would get by.
They absolutely 100% ignore any semblance of a sleep cycle for their patients (as well as proper nutrition but that's for another day). Constant interruptions to check vitals, ask if we want to pick a meal, beeping infusion pumps, a whole squad going on rounds with banal questions...it seems to never end.
I'd like to find a watch/fitbit for her and either find or write an app that just fills the screen with a color based on her current sleep phase...green she's awake, yellow light sleep and red means she's in REM or deep sleep and should not be disturbed unless necessary. Place that by the door so the nurses can see and hopefully adjust their timing accordingly.