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Angry [Jan. 18th, 2013|07:18 am]
I'm sitting in the waiting room after getting a desperate 5am text from Ferrett. Nothing is working, and he was awake all night again. This was after Erin and I made an extra trip in here last night to check on him, because he had suffered a sleepless night the night before.

He wanted a Xanax because the anxiety is making it very hard to sleep. He has wearing the CPAP mask because the nurse told him it would help force air further into his lungs and speed his healing. His understanding was that his reward for sitting up with the CPAP was that he would get a Xanax after a couple hours of it. When I asked the nurse, he said in a patronizing but reassuring way that, yes, he would give Ferrett the Xanax as soon as he could.

All of which was a lie by omission. He has Xanax prescribed 3 times a day, which means every 8 hours. So "as soon as he could have it" turned out to be 5am. I went home thinking that he was going to get it by midnight or so. Instead he was up all night, frantic. The nurse was all, "well he just stayed on the phone all night" like Ferrett was intentionally avoiding sleep. Then he asked what he took at home to sleep--which is NOTHING.

But hey, my saying "please call if he's having problems" apparently just meant that I'm a dumb bitch who should be ignored.

I am exhausted, and I am angry about the whole process. I don't know who they think they are making feel better by telling them that three to five days is the normal hospital stay. We're on day 3 and he's still in ICU--and nurse friends are saying that this is good progress. I feel like we've been misled, and because of that none of us have paced ourselves for this. A more realistic assessment of the situation would have been helpful, because, hey, if he's beating the timeline, we feel better. As it is, we all just feel behind and frustrated and so very sick of the hospital without any realistic idea of how much longer this is going to be.

By tonight he will be in a room (dear god I hope), and at that point I figure I am just going to have to sleep here with him. Because this is terrible.

[User Picture]From: terriaminute
2013-01-18 12:25 pm (UTC)
Report that nurse. That is horribly unprofessional to treat a patient and his mate with disrespect as humans. He should have no contact with patents until he's gone through some hard retraining by real professionals.

Not having a realistic timeline is very frustrating. Sometimes they don't know, sometimes they don't read you right and are too optimistic or pessimistic for you, it's the trouble with humans. We make mistakes and misread each other. Correct these mistakes wherever possible for your own sake. You guys need to have facts!
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[User Picture]From: horizonchaser
2013-01-18 02:51 pm (UTC)
Seriously, that nurse should be reported. Tra la la, the patient was on the phone, didn't want to disturb him? That is BS. The nurse isn't a maid, they've got a patient to help get well.

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[User Picture]From: zoethe
2013-01-18 03:51 pm (UTC)
Actually, it was more, "If he'd just put his phone away he would have slept." Which was bullshit.
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[User Picture]From: theferrett
2013-01-19 11:45 am (UTC)
I wasn't on the phone. I was just clutching it, like a teddy bear , when I'm in the hospital. When I can't sleep.
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[User Picture]From: merle_
2013-01-18 12:28 pm (UTC)
Just be sure to take care of you, too. Waking up to exhausted and drained friends increases worries and you want to look on top of things even when you are frantic. Take loads of snacks and a comfy blanket, and something to distract you. Maybe a book to read aloud to him too? Smothering the "wow this sucks for everyone" feeling is hard but a believable facade can help.
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[User Picture]From: brujah
2013-01-18 01:37 pm (UTC)
Go over the shift nurse's head. Talk, personally, to the surgeon or to someone in the administration staff.

He has a history of anxiety and I can't think of a damned thing on this planet scarier than having your fucking body rebuilt. Shame on the lot of them for being emotionless twats.

The pace in which he will heal will be his own, having his pace set by someone else will just put pressure on him (and you.)

You're both in my thoughts. Love.
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[User Picture]From: brujah
2013-01-18 01:39 pm (UTC)
Just for information's sake, my Dad was home within 8 days. Maybe that'll give you a more solid timeline from someone else's experience?
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[User Picture]From: zoethe
2013-01-18 01:57 pm (UTC)
Our primary care physician, who is AWESOME, just came in and is adjusting his anxiety meds. And thank you for the timeline. I'm now switching into long-haul mode for the hospital.
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[User Picture]From: mariadkins
2013-01-18 03:01 pm (UTC)
thank the gods!
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[User Picture]From: xjenavivex
2013-01-18 07:36 pm (UTC)
Very glad to hear this. I am sorry you are going through so much.
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[User Picture]From: ccr1138
2013-01-18 02:00 pm (UTC)
I feel your pain. Hospitals are not the place to get any rest. As a patient, I remember them coming into my room every hour to do something to me -- the worst was the blood draw out of the wrist for pulse-oxygen levels. They don't let you sleep. When Jeff was in for his various problems over the last few years, I camped out as much as possible, and yes, there were good nurses and bad. All I can offer you is, this, too, shall pass. In a few days, it will be a horrible memory. Definitely not uncommon, though.

Also, it might help if you change your thinking. It's not a competition, so beating the timeline of the normal recovery process has no real value. It takes as long as it takes, so setting artificial goals for when you get out of ICU or when you go home just makes you crazy. Go with the flow. But don't put up with incompetence; you can definitely make your complaints known. I think I would start with the nurse in question, pointing out that you don't want any more miscommunication. They need to understand that patients often stew in misery with the only glimmer of hope being that promised pill. When it doesn't materialize at the promised time, it's devastating.
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[User Picture]From: ccr1138
2013-01-18 02:05 pm (UTC)
One more thing I forgot to mention. Jeff's stay in cardiac ICU was extended three days because he had a fever that wouldn't go away, and the surgeon/infection doctors wouldn't sign off on moving him. Later, our insurance company tried to make us pay the difference for those three days because they weren't pre-approved. I hate to add to your burdens, but if they are keeping him longer than estimated, make sure to get your insurance ducks in a row now, rather than be blindsided. I protested and they eventually paid, but there was a scary number of dollars on that bill for a while.
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[User Picture]From: halfmoon_mollie
2013-01-18 02:07 pm (UTC)
I know you don't want to hear this, but a hospital is a terrible place to be sick. (Those words from my hemophiliac brother, who spent LOTS of time in the hospital).

Still holding you in my best thoughts, and if you will accept my reassurances, this will get sorted out and he will be better.

It's great he has you to help advocate for him.
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[User Picture]From: stonehenge1121
2013-01-18 02:26 pm (UTC)
I'm an ICU nurse (trauma, not cardiac, so I have a smaller idea about timeline). I have been for a long time. Get the unit manager involved; this sounds like a nurse who really is a piece of shit. Even in a good unit, you get nurses who are pretty much a waste of space, and unfortunately it sounds like you ran into one. His manager needs to know, and I'd advise making it a formal complaint. Yes, talk to the surgeon too, but make sure that the manager has a talk with you. To treat a patient like that is pure BULLSHIT, and a disgrace to my profession.
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[User Picture]From: hugh_mannity
2013-01-18 02:55 pm (UTC)
I had surgery last month. There was a whiteboard in my room (visible from the bed) where they wrote the time my next pain meds were due. And updated it every time I got more meds. My nurse's names were on the whiteboard, as was the head nurse's phone #. All my day's tests and activities were written up there too. Admittedly that wasn't ICU, but there's no reason why a conscious patient shouldn't have access to that information. Knowing what's going on goes a long way to relieve anxiety.

There's absolutely no reason why they couldn't have either told you or Ferrett when the next Xanax was due. Or if the dosage wasn't adequate, got a doctor to review it.

Talk to the unit manager or the patient services people. Make a formal complaint. Because that is not kosher.
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From: anonymousalex
2013-01-18 03:00 pm (UTC)
Not knowing how long things will be, or having your estimates turn out to be wrong, can be one of the most frustrating parts of the whole experience, I know, though sometimes that is unavoidable. But having a nurse like that just makes the problems exponentially worse.

Further to what others have said, some hospitals actually have an ombudsman or patient advocate whose job it is (amongst other things) to deal with patient-staff issues like this. Seek them out if there is one available.

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[User Picture]From: mariadkins
2013-01-18 03:00 pm (UTC)
i'm in tears. but i agree - that nurse needs to be reported. ask to speak with a patient advocate; they have to provide one.

Edited at 2013-01-18 03:02 pm (UTC)
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[User Picture]From: cindyg
2013-01-18 03:22 pm (UTC)
Oh gah, get that nurse up for disciplinary measures, stat! That is a terrible way to treat patients.
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[User Picture]From: sterling_raptor
2013-01-18 03:37 pm (UTC)
I'm not sure how helpful this will be but, when AJ had his heart attack, he was in ICU for 7-10 days, and then in regular care for around another week. AJ did NOT have to have surgery beyond angiograms and stents, however, he did have to have CPR and was intubated for around 4 days. I had the luxury of never having to leave AJ so if he wasn't getting meds, I made the nurses' lives a living hell. And that is what it takes sometimes. We had one really great nurse, a slew of ok ones, and a hot mess of ones that we either never saw, never answered the call button, or didn't listen. I had a medication timetable in my head and if meds were more than 15 minutes late, I went to find out why. Watching AJ in pain tore me apart and I was so glad when we finally got the great nurse. I do recommend staying with Ferrett when the hospital lets you because he is just another patient to them, no matter what they say. If you need to talk feel free to drop me a line: 931 980 0446
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[User Picture]From: darthfox
2013-01-18 04:03 pm (UTC)
Yes, this. Even to the best nursing staff, one patient is one among many - these people are at work, after all, and they can't possibly be as invested in every patient as that patient's family or else they'd burn out. Not that this excuses the nurse you mention, mind. But one of the biggest things you can do is advocate. Some time I'll tell you the story in which I appear as The Daughter, clearly with exactly those capital letters. I should get a big D logo and a cape.
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[User Picture]From: sterling_raptor
2013-01-18 04:06 pm (UTC)
I was The Wife. The sound of my boots coming toward the nurses' station became synonymous with someone about to be having a bad day. Because yes, I will start making phone calls at 1am to the people who run the damn hospital and drag their asses out of bed. I will be at the patient advocate office at 0800 after a sleepless night, waiting to rip someone's face off. Oh yessss, bad hospital staff...fear The Family.
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[User Picture]From: fallconsmate
2013-01-19 02:55 am (UTC)
hell, i was "just" The Mate, but the nurses got to the point that they would call *me* on days the new doctors went on rotation through the ward. (fal had cancer. the doctors would look at the amount of pain medication his pain *specialist* had prescribed and immediately go to drop the amount.)

he used to refer to this as "putting the fear of the short woman" into them. the nurses found this VERY amusing. and aside from ONE nurse on the surgical ward, every one of his nurses was amazing. and that made those four months livable.

he had colon cancer. he died literally 4 months to the day after he was admitted to the hospital from the emergency department. my mama was a nurse, my granny was a nurse. nurses are human beings, so some of them are fsking misearable human beings, but the amazing ones make life bearable during a horrible terrible time of one's life. the hospice nurse who held me as i sobbed christmas morning six years ago, she was worth her weight in rhodium. (related to platinum, more expensive)
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[User Picture]From: mariness
2013-01-18 03:40 pm (UTC)
Echoing everyone else here: report the nurse.

I don't think it's particularly unusual or alarming to spend three days in the ICU after a major operation, but obviously that's easy for me to say.
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[User Picture]From: smldada9801
2013-01-18 04:03 pm (UTC)
Hugs. Just hugs. That is really frustrating.

Echoing everyone else, please report that nurse. That type of treatment is unacceptable. Perhaps beware that you may be assigned that nurse again on his next shift if you re still in that unit, so know that you can speak to the head nurse or floor supervisor and demand a different nurse be assigned to Ferrett.
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[User Picture]From: bart_calendar
2013-01-18 04:08 pm (UTC)
Why are they being shitty about giving him Xanax?

Hell, this morning I was out of Xanax, tried to see my doctor but he had taken the day off, so I just walked into my pharmacy and asked for some and they sold me a 30 pack.

Recovering from heart surgery would give anyone anxiety - and that's what xanax is for!
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[User Picture]From: christilyn
2013-01-18 04:09 pm (UTC)
OH GINI, I feel your pain...and his...with regard to hospitalizations. I've had 11 surgeries in the last 18 years and I know one thing: Hospitals are THE WORST places in the entire world to get well.

With my recent mastectomy last month, the nurse came in at 2:30am and told me that the doctor wanted me to urinate 5 hours after surgery. That would, which would be 2:30am. So I dragged myself out of bed and peed. Vitals every hour...and a stupid pulse-ox that went off every few minutes as my pulse dropped below 60--because I AM A RUNNER and my resting pulse rate is low.

That said, I have NEVER had an experience like that. Xanax is something they can give more often than "every 8 hours." The sleep is a serious issue if he's going to be in the hospital for a while--who can sleep in that place without help? I'm glad to see in your comments that the doc has adjusted his meds so the nurses can do a better job controlling his sleep and anxiety.

It may help him if you make up a chart/timetable for his meds so he knows what to expect, and when to expect it, and he can point to it if anyone's not adhering to it when you aren't there to advocate. Good luck to you guys...here's hope he's home very soon.
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[User Picture]From: kathrynrose
2013-01-18 04:15 pm (UTC)
::hug:: If I were there I'd smite them for you.
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From: anonymousalex
2013-01-18 05:19 pm (UTC)
I'm not sure why, but using the word "smite" in this context made me giggle.

Not that they don't deserve it.

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[User Picture]From: kathrynrose
2013-01-18 05:21 pm (UTC)
Yay! That's why I picked it. :)
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From: (Anonymous)
2013-01-18 05:13 pm (UTC)
Neither you nor Ferrett "know" me, but I read and appreciate his LJ, so that's what brought me here. Thank you for the updates.

First of all, how frustrating and angry-making that treatment is! You have enough on your plate without antagonistic nurses. Empathy from here.

One of my biggest fears, being a single person without any family to speak of, is landing in the hospital without an advocate. In that way, how fantastic that Ferrett has you. My mom was in neuro intensive care (20 years ago), after having a brain hemorrhage, and my brother and I were there around the clock, along with a distant cousin who was a retired ER nurse. So we were able to advocate for her, and to do so with some "inside" knowledge. Most of the time we didn't have to (because the staff were good), but sometimes they forgot, or weren't there to see what we saw, etc. So I think we made things better for my mom by being there as advocates (besides just making her feel good that we were there of course).

At one point we got to be good friends with one of the nurses especially, and she said, "You know, we try to treat everyone well, and equally, but I know in my heart of hearts that we treat the people who have good, present advocates better." I don't think it was from a "we have to or we might get caught" angle, either. I think maybe it was some subconscious human thing wherein someone who has lots of people who care about them just seems more careworthy? (For right or wrong.)

I'm thinking of you and sending good thoughts.

Ye olde anonymous-yet-caring Ferrett blog reader
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[User Picture]From: fabricdragon
2013-01-18 05:51 pm (UTC)
i forget the schedule from dad's recovery...

given that he has anxiety issues, you should be talking to a patient advocate... because there is a trade off of "do not want to sedate patient with breathing problems" versus "anxiety slows healing"

and they can damn well re schedule the "every 8 hours" to be "at bedtime"

you call me if you need anything. i have flu so i cannot go to the hospital anyway but i can call up and do anything by phone
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[User Picture]From: dharawal
2013-01-19 03:41 am (UTC)
That sucks, and I LOVE Nurses, really they saved my life and kept me sane when I was Hospital for 9 months last year, however I came across some people who really just should not be nurses.

I reported one nurse to the NUM (Nursing Unit Manager) because she was so rude and disrespectful to one old man, he was admitted to hospital because he was severely constipated, so of course they gave him that wonderful medication that would unblock a solid concrete pipe, they put him in a adult nappy because he had mobility problems and couldnt make it to the toilet quickly enough all the time. He dirtied one nappy and she refused, REFUSED to put another one on him, said he could use the loo, yes there was a loo in our room, but it was across the other side of the large room through two lots of curtains and the inevitable happened.

He dirtied the bed, she made him stand up while she changed the sheets and of course he ended up pooing on the floor, it was running down his leg and she yelled at him, called him a dirty nasty old bastard who was doing it on purpose to make her life difficult, and the poor bugger was standing there crying.

If I could have gotten out of bed and confronted her I would have, but as soon as the shift changed I told the new nurse what happened and that I was going to complain to the NUM, she came to see me as soon as she arrived, took my statement, talked to the old man and we never saw that nurse again.

I was horrified.

Here's hoping that Ferret gets the medications that he needs, when he needs them.
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[User Picture]From: midnightsjane
2013-01-19 05:55 am (UTC)
I'm an ICU nurse, have been for over 30 years. From that perspective, every person's experience in ICU is a very individual one. There are many, many factors that come in to play in each person's treatment, and sometimes we do things (like withhold sedatives) because we are concerned about the basics of breathing, blood pressure etc. It's hard to comment on what happened, since I wasn't there, but you are certainly within your rights to expect that Ferett be treated with respect.
I'm glad to see from your more recent post that he's being transferred out of ICU. I hope he continues to have a speedy recovery.
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[User Picture]From: zoethe
2013-01-19 02:16 pm (UTC)
I do understand that the patient and family can't always get what they want. But this guy was condescending and patronizing at best, and openly rude at times. He was assigned only two patients and yet acted like Ferrett was a HUGE inconvenience any time he asked for something.

I've been frustrated by nurses in the past, but this was a whole other level of disrespect and dishonesty.
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[User Picture]From: dana3
2013-01-20 05:06 pm (UTC)
"but this was a whole other level of disrespect and"
... and poor nursing practice. TID (3x/day) does NOT notnotnot mean every 8 hours. q8h means every 8 hours! Grrrrrrrrrr ...

Glad the PCP fixed it. Glad he's getting better. Glad you had some downtime. All in all, glad things are looking up! Floor nurses are usually more responsive to the human needs part. Usually. (J missed his sleeper for hours one night when he was in on a tele floor -- but they had 4 codes on the floor during that time, so hey.) Get some sleep, Mr Ferrett!!
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[User Picture]From: dabble
2013-01-19 01:30 pm (UTC)
I am so sorry to you both.

I did ten days in hospital last October. Five in ICU, five in general ward. When I got home, I couldn't believe how quiet or dark it could get. </p>

If you are sensitive to noise and sound, a natural people watcher, and introverted enough to need down time away from people to recharge - hospital is exhausting. I am literally feeling Ferret's pain right now. I only got released early when my doctor caught me unaware, and with my barriers down I couldn't stop weeping.

Sleep will help. Quiet, silent time with a loved one sitting next to him giving him a focus with no expectations helps. I felt protected when I had someone to run interference without needing me to interact.

He will get better. He will rest and heal and so will you xxx

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