rolanni | Interim report, sorta

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Interim report, sorta

EDITED TO ADD: The elusive doctor showed up in Steve's room about an hour after I left for the day-job. Steve hit autodial on his cell and stuck it under same doctor's ear, with "Please talk to my wife. Her name is Sharon." So, we talked, and I now have information. It appears that there is More Than One Thing Going On -- hence the "doctor scrum" reported by Steve on his FB page yesterday. I think I have a clear understanding of what this doctor is about, and have a phone! number! in case I have more questions.

The release date apparently hangs on a question of how long Steve's fever has been low enough to satisfy the other doctor. Who I will now commence to stalk.

Thank you all for your advice and caring!

Steve is still in the hospital. (I realize that it's only been since Sunday night, but it seems much, much longer than that.) The in-house doctor has mixed his drugs around and seems to have backed off from "you can go home Wednesday" without offering another release day. This is...troubling.

Even more troubling is that I have not myself seen or spoken to the in-house doctor, whose schedule appears to be insanely erratic. He arrives and talks to Steve, but Steve is in the hospital for a reason, and I'd really like to hear what the man is saying from himself, and clear up some questions I have, based on Steve's interpretation. I tried this morning to find out when the doctor might be on the hall so I could be likewise, but the nursing staff wouldn't/couldn't commit. Steve's day-nurse did promise to call the doctor's office to see if they knew when he might be about, but she was not sanguine.

We've been very, very lucky so far in that our experiences with hospitals have mostly been limited to day surgeries and emergency room visits. I know that this has not been the case with some who read here. Strategies for coping with hospital/doctor culture are very welcome.

In other news, Hexapuma at 2 a.m. wished to report to the World and Beyond that Steve was not in the bed, he was not in his office, he was not in the basement, or the living room, or ANYWHERE. I gather that a Strong Letter of Protest will be or has been posted to the Maine Coon Cat Northeast Regional Office and that I can expect A Call.

Fans of the day-job will be delighted to learn that all data entry in hand for the deadlined search has been completed, and all filing ditto.

I don't think I mentioned here that Toni has read Ghost Ship and requested expansion of a couple scenes -- nothing too strenuous, really. Which is Good.

...and that's all the news that's fit to print.

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The general strategy we've always used is to simply camp out a healthy/responsible person with the afflicted, full time. It is not time efficient. It is not space efficient. Honestly, it's pretty batshit crazy. But that's what I've seen work :(.

Our health system... isn't. And I'm really sorry the two of you are running into it.

My wife has had more life threathening hospital stays than I care to remember. We have done that as well and in fact that person or persons is designated the impatient whose job to hold the powers that be accountable. Channel Daav. That should do it. While I suspect that this is just medical caution designed to convey to Steve how SERIOUS taking care of himself is and the need to TAKE IT EASY to insure a full recovery (because it really is- I was on VERY light duty for a month and I managed to talk my way out of hospitalization so be warned)they should be talking to you more. We will keep you, Steve and of course the cats in our prayers.

Sorry about posting to myself but I just remembered. Try email. A lot of doctors love this as they (or their nurse-another beauty of the system) can tell you what is going on on their time. YMMV, but where I am at that can work very well as a option to be informed.

Camp out at the nurse's station and refuse to leave. It's amazing how quickly they can produce A Doctor then (my dad did this when I was in a London hospital. I think they were afraid the Yank was going to pull out a six-shooter, or something...)

Best wishes to both of you.
And let's hope Hexapuma doesn't sue you.

Edited 2010-10-19 13:27 (UTC)

Does your hospital have a patient advocate? Or does Steve have a personal doctor with whom you have a good relationship: a doctor can call the attending and get a lot better picture of what's going on. And frankly, his 'in house' doctor ought to be able to tell you when he'll be making rounds. If he can't, if, for instance there are too many emergency calls taking him hither, thither and yon, then Steve needs his personal physician to step in and sort this out.

YMMV, but most hospitals no longer allow any interaction from a "personal physician". they are not allowed to see or treat the patient, although they can, if they are able, phone the hospitalist doctor and discuss - but if the family can't reach the hospitalist then likely the family doctor isn't going to have the time to do that either. sad and frustrating.

I have always camped out, but another method is call the office nurse. She will call you back on the phone that is listed on record so be close to that phone. She/he can read the doctors report over the phone to you. Problem is when running tests to rule out underlaying cause, they may suspect but not know what is going on. I have spots on my lungs from a childhood illness, so every time a new doc is involved I get a run of tests to rule out lung cancer---again. They just want to be safe. Good luck, and thinking of you. June

Can't offer any strategies except persistence -- your description sounds too much like what we encountered when MIL was in the hospital last year. Garbled information received third-hand, couldn't get hold of the doctor, hospital wouldn't tell us *how* to get hold of him, wouldn't commit on when she'd get out, etc, etc.

Wife points out that having someone in the hospital can be as exhausting on the person outside as it is on the patient. Take care of yourself. Time off from the Day Job?

Having had two ill, elderly parents, I had been seeing them in the hospital probably once a month for about three years. I will spare you the stories. Do be very insistent to see the doctor that is treating Steve. Be polite once you see him/her it's probably not their fault they have erratic hours. If you and Steve have a regular doc, phone them and let them know why Steve is in the hospital, they may be able to consult with the on-duty doc and let you know the info. Also they may be able to get any meds straightened out. Normally I laugh at the hand sanitizer crowd, but this is an instance when I would use it, you don't want to bring home worse than you are already dealing with. Sue H in SC, who isn't very good with words, but wishes you both an easy time with this situation.

I'm so sorry to hear this.

I agree with the other posters that the only proven strategy is camping out at the hospital. Even leaving all your phone numbers doesn't help--the message may not get to the doctor, or the doctor may just ignore it.

If you have the name of the doctor, calling his office directly (and frequently) may produce results.

Larger hospitals usually have a patient advocate or patient care coordinator who is supposed to work with the family to help them navigate the hospital system, making sure they are getting the right info especially in situations where multiple doctors are seeing the patient. Sometimes the system works, sometimes it doesn't.

The hospital may also have a discharge planner , who is supposed to work with the family on the "what happens after the hospital" plan. I've had situations with my father where the first news we had that the doctor was planning to release him came not from his doctor, but from the discharge planner. At that point, you tell the discharge planner that no decisions can be made until you've personally spoken with the doctor. The discharge planner usually leans on the doctor to meet with you, just to get you off his to-do list.

Bottom line, this will suck. You're going to need to be firm, persistent, polite but generally a pain in the ass until they realize that they need to deal with you directly. Steve, to the extent that he can, should also repeat this message, so when the doctor comes in, if you're not there he should say "My wife needs to hear this, please call her at #" or "When can she meet you?"

Sending virtual hugs and good thoughts your way.

I heart the Internet so hard.

I was going to chime in with pretty much everything that's already said, so I can only say now, what *they* said. The only small thing I would add is ask is there anyone that you can ask for help? Getting another body to park/make calls/just in general be annoying till they speak to you, is hugely helpful. It also takes a huge burden and halves it.

Also, I can't reiterate strenuously enough, take care of *yourself*.

We're all pulling for you both.

- Angela

don't know about maine, but in california all hospital care is done by a "hospitalist" doctor who only treats people in the hospital and no other doctor (i.e. "your doctor") is allowed to participate. the hospitalist shows up when and where he/she has time and does not meet with family or schedule any time. this is quite frustrating. i didn't believe it when i first encountered it, but indeed it is so.

I've had to do the same thing with dealing with the Hospitalist. I would get lucky and also get the nurse practitioner for my grandmother's specialist to come in but I mostly sat all day in the room waiting to pounce on any of them.

Pretty much echoing everyone else about camping out.

paulcory hopefully will chime in with his side of things; from the patient end (me), the doctors seemed to showed up once a day usually sometime between 7 and 9am but it was always a random time within that two-hour window.

oh, and just so you remember, THIS is the medical care for which you keep the day job.

No, no. I keep the day-job so that this adventure will perhaps not mean that we lose our house.

I'll repeat it: you must camp out. If you can't, is there anyone else who can be there for you? It's not just so you can catch the doctor, though goodness knows, that's important enough. When my husband had open-heart surgery, we discovered it was essential for a non-patient person (me, in our case) to be present for all discussions/instructions/treatments. The patient is simply not able to remember everything, or be on top of all the activity. This includes things like knowing which meds he's supposed to be getting, and when. You DO have to watch the staff in that regard - they mean well, but mistakes are sometimes made.

If you can take any time off at all, (sick time? Family Leave?) it would be the best thing to do. Even if it's just a day or two, so you can get control of the situation.

Good luck to both of you. Stay sane.

Hang in there. I've nothing to add but good wishes.

Oz

Please inform Hexapum that Midget has taken it upon herself to channel to to the Maine Coon Cat Northeast Regional Office and informed them of what is going on with Steve. They have promised to be gentle with you, but to insist that this not happen again in the foreseeable future. (Midget being a Silky and who has gone thru this herself says to tell Hexapuma that "all will be well".)

I've done this with assorted family members as well as being hospitalized myself all in Tennessee. Best case is to have someone with Steve 24/7. This accomplishes two things. 1) They can go out and get water etcetera without having to ring for the nurse "Excuse me, where can I get Steve some ice/water/firegems? We didn't want to bother anyone for the simple things." This makes nurses happy. Making nurses happy is a Good Thing. If they don't want kith or kin doing that, they'll tell you. You can tell a lot about patient care by the attitude of the nurses.
2) It's the only way you can be sure to catch the docs. In Nashvegas we're normally dealing with doctors making rounds dragging residents & interns with them. This means they're doing it within a half hour plus or minus of the same time each day unless there is an emergency with another patient. Normally this runs around 5-7 am & pm depending on the unit. If the nurses can't give you a time when the doctor makes his rounds, I suspect something. I'm not paranoid, I'm just safety conscious. I would ask your pcp what s/he thinks about the doc/s taking care of Steve.

I was wondering how long it would take Hexapuma to become suspicious. ::wry grin:: Purrs & prayers for you & yours still incoming from me & mine.

And the hospital's own website recommends "... having a loved one or a friend by your side as an advocate watching out for you - maybe taking notes, or helping you remember to ask certain questions – can give you added comfort and confidence during your hospital stay. As another set of eyes and ears, an advocate is an important link in our partnership for safe healthcare."

So the hospital recommends the advocate who is there and ready to tackle people to take notes, ask questions, and generally be alert. They suggest that the patient inform the doctors and staff who is the advocate and how this advocate should be involve. See further information here from the National Patient Safety Foundation - http://www.npsf.org/pdf/paf/PatientAdvocate.pdf

Good luck! I can only echo all the others sending you good thoughts and well wishes.

Same as above. Make sure that you take notes - and are seen to take notes.
Unfortunately the nursing shifts vary in quality. Which makes it all the more necessary to have someone monitoring whet is going on. Many years ago (when health care was actually better) my father had gall bladder surgery. A couple of days late my mum got a phone call from him -he had been trying to buzz the floor nurse with no results, and had managed to reach the phone and dial it by feel. Turned out that when they had tidied/changed the bed, someone had not reconnected the buzzer!
Perhaps a small cassette recorder so that Steve can tape the Dr's comments in your absence would be of some assistance.

Looks like you're getting good advice, so I'll just add that someone else is out here keeping you and yours in her prayers.
mf

In addition to all the other chiming in, I would add that if you have a friend who is nurse,etc, it might be good to talk with them about how to work the system (they have seen from the other side and know what works and what you can get away with). One of my nurse friends kept reminding me "the patient is the customer- this stuff is supposed to be for your benefit" and offers to be available on the phone for bureaucratic navigation guidance.

Also, the better you understand WHY they are trying to do what they do, the more likely you are to be able to catch when something goes against that stated goal.

A good book on patient advocacy (and advertency) is "Renegade Patient" http://www.amazon.com/Renegade-Patient-No-Nonsense-Practical-Getting/dp/0976379775/ref=sr_1_1?ie=UTF8&s=books&qid=1287503837&sr=8-1 Don't forget that your records are YOURs.

Bob

Wiktory! Successful stalking of the other doctor!

if they dont have a Patient Advocate, then try their Social Worker office.

If you are lucky one of the nurses there will talk to you, and interpret the charts.

Sigh. Of course illness should be as hard on the well as possible...

I heartily second the small tape recorder tucked in Steve's hand.
And playback of what the Dr. said , and always asking what meds they are giving him... Do not trust, and verify. And Goddess, take care of yourself. This is so frustrating. Blessings and good thoughts.
Nanette

Sadly, my mum's experience regarding Doctors and the schedule attached thereto leads me to believe that their appearance, or not, is determined by the drawing of small numbered balls from a bag. Lucky for her she was a nurse in a past life, and so was able to command attention and information from the elusive and wayward once they'd turned up. However, as I'm in a different country/hemisphere, all I can offer up is my thoughts and good wishes, and a strong plea to the Maine Coon Cat Northwest Regional Office not to sue.

Glad that you have spoken to the doctor. As others have mentioned, camping out seems to be the only reliable way to make sure that you speak to the doctor and to make sure that all the little things that the patient needs are handled. Unfortunately, in smaller households with two wage earners this is not always practical or possible.

Good thoughts to you and Steve. Skritches to Hexapuma and the others.

Susan in Orlando

Time does tend to dilate when you're worried, so this time of
Trials and Tribulations seems to go on forever....I found when
Mom was in Hospital during her chemo, that asking the nurses lots
of questions was the only way to get anywhere. I was a pest, I admit.
But! It got Mom meds earlier rather than later - and when you're
in pain that matters. It also got doctors chasing my brother and I
down so they could answer questions and Stop Bugging The Nurses.

Hmmn. Perhaps you could take Hex in and let him yowl at the nurses?
It would kill 2 birds with one yowl. :) Yes, I know I'm an evil
one...but hey, who says Balance has to be pretty?

Here's hoping things clear up quickly and I will keep you and yours
in my thoughts and prayers.
Lauretta@ConstellationBooks

best wishes for Steve's speedy recovery.
Lorna

Good thoughts and warm wishes to both of you. Hope you have better luck in the future talking to the doctor-critter.

Oh dear! Hope that Steve recovers well. o_o

Also get copies of anything on paper -(test results, case notes & directions) that you can. They always claim that they are going to send stuff to your regular practitioner, but the process can be slower than molasses in January, and, just like the banks, documents fall through all sorts of cracks. Having a file in your own hand can save all sorts of problems.

My nephew has been in and out of the hospital many times. My sister's recommendations are:
1. Have someone stay with Steve at all times; nurses are short staffed and over worked; medication mistakes are more frequent than you know.
2. Begin a LOG in a notebook of every doctor interaction and comments by/to said drs. Also add every document, etc.
3. Tape recorders are a GOOD THING.
4. Pack a hospital bag for yourself - snacks, warm blanket, small pillow, good book, phone charger, laptop, etc. Hospital time is strangely different from real word time....
Sending good thoughts your way - wish I were there to help out.
Barbara in Texas

Echoing everyone else's best wishes for Steve's speedy recovery and for you taking care of yourself as best you can in the situation.

A suggestion from my sister-in-law the RN: put a bowl in Steve's room, and fill it with individually wrapped hard candies, like lemon drops, butterscotch, mints ... and put a little postit next to the bowl saying "Thank you to the staff who care for my family" -- this small and cheap gesture generates an enormous amount of good-will, and also tends to attract staff to the bowl, making them available for your canny questions.

If you can swing it, take time off from the day job and camp in the hospital with Steve. I was fortunate enough to be able to that with Laura last year, and my conclusion was that a patient needs an advocate. The patient is sick and stressed, and the doctors and nurses generally have more work to do than they should. Having a healthy, on top of things person there to keep the medical staff alerted to issues and to ask important questions (such as, why are you trying to give a blood thinner to a person who's relying a clot in their femoral artery to prevent them from bleeding out?) is a necessity.

No, it's no fun, and shouldn't be necessary. But that's the current reality.

I hope the docs get it figured out and Steve gets home soon. My thoughts are with you both.

I'm so sorry to hear of the stress the entire household is going thru (Hexampuma is being a drama queen, really).

I enjoyed talking to Steve at AlbaCon and he seemed fine then. I hope he's well enough to read, as it can be very boring for hours at a time in a hospital (spent a week in bed just before AlbaCon and my laptop became a stomachtop, but at least I could read ebooks and watch dvds that way.)

(I'm glad there weren't many changes for Ghost Ship as that would be a lot on top of everything else)

I don't have any new/different "dealing with the hospital" pearls of wisdom, but as much as you can, take care of yourself too.

Angie

You could always tell them that you want to bring Hexapuma in to Steve for "animal-assisted therapy." It is found in lots of hospitals now. Mostly seems to be dogs, but maybe if a Call is Made from MCCNRO...

Glad to hear you have received information.
My thoughts, added to those before:
1) make sure the staff and physicians know they are permitted to talk to you. People are often worried about potential repercussions of information being given out (HIPPA may have been good for insurance, but it's had a Miserable effect on communication).
2) Depending on whether the doc is an 'in-house only' (aka hospitalist) or does both in/out-patient care, (s)he is likely to do rounds at different times.
a) if a hospitalist, will likely be by around the same time daily - BUT will usually go the sickest patients first. So, if there are sicker patients, you will be seen later (and this could be much later).
b) if doing both in/outpatient care, usually stops by either before or after office hours
3) Tape recorders are good (but may be annoying for the doc)
4) Notebooks work well; copies of labs/test (ALL of them) are good. Specific diagnoses, or a list of potential problems can be useful - but don't spent too much time on the internet looking them up: there's a lot of not-so-good information out there.
5) Getting the nursing staff on your side is essential.
6) Patient advocates can be very helpful. A caveat: in some hospitals they are used mainly to deal with confrontations, not communication.
7) What Steve did with the phone was Excellent. That way you both heard what the doc said at the same time, and can cross-check each other's interpretation of the conversation.
8) Camping out works; but is often not practical. (See #5 above)

best wishes to you both (and the cats).

Spotted an interesting piece of advice in the comments: haunt the nurses. The nurses take care of the patients the doctors really don't. The nurses should be able to tell you something if this goes on, which I hope it doesn't. Also, if you can find out what medications are being prescribed I would ask your pharmacist about those and what they might mean in terms of what are the medical conditions. In my experience the pharmacists know more about drugs than the doctors. One should be asking pharmacists to be sure there are no bad drug interactions anyway.

Barks to Hexapuma. I agree with him that the situation is definitely not to be tolerated. He has no doubt petitioned the Big Coon Cat In The Sky for redress. I'm sure that will help C.

One thing to think about it to check with the patients advocate. Each hospital should have one. If you aren't getting into contact with people you need to, you can try that route. Of course, then the doc and nurses will get pissed...but hey...you deserve to get the information.

Good luck and all the best thoughts and prayers to Steve and you.

I second camping out at the nurse's station. You may have to break down and spend the night once. Having someone there to be proactive for the patient can be Very Important. I am sure you know that the hospital itself, with overworked people not quite making out notes and messages, may be a greater danger than the pneumonia.

It sounds like Steve may actually come home Saturday. If he doesn't, and anyone is still stonewalling about speaking to The Person In Charge, it is camp-out time. Call in the cat sitters and bring the camp bed!

I also recommend baking brownies. Nurses like brownies, and deserve them. Brownies and tangerines are perfect -- covers the healthy contingent and the sugar rush -- plus chocolate is always popular.

I like the tape recorder idea -- if you know where one is, use it! Also type up a list of "People staff can call if I cannot be immediately found." The sheer idiocy gone through when a friend of mine collapsed at his sports club was bizarre and frightening. I now carry an extensive list of local people to call, and where to find family in the greater USA.

Flat | Top-Level Comments Only

Interim report, sorta

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hospitals,getting info

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Hexapuma

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The term is 'patient advocate'

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steve

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Oh, My.

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hang in

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Hope Steve is Sprung Soon

Being sick ain't no fun!

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