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Updates on my FH

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Re: Updates on my FH

  • @tigerlily6 your words are so sweet. Thank you  <3
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  • Changed the title of the thread.
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  • I'm incredibly late to all of this, but I'm extremely sorry spock! You both have amazing attitudes in the face of such a life changing event, and it seems as though you are an incredible match for each other. I will hold both of you in my thoughts. Hugs to you both.

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  • edited March 2016
    sarahufl said:
    Just popping in to check for an update. I think it's normal to miss his leg (for both of you) and wonder what may have been. But I love how forward-thinking you both are. Such inspirations.

    Thank you for being so open and thoughtful in your responses. Really puts things in perspective. I think so many people see weddings as invites and fluffy dresses, but you are really, really demonstrating the "for better or worse, in sickness and in health" part. You are very lucky to have each other. You are in my thoughts daily.
    If I could love this over and over again, I would, @sarahufl.

    Thinking of you and FH, @spockforprez.
  • Thank you so much for continuing the updates, Spock. I continue to keep you and your FI in my prayers.

  • sarahufl said:
    Just popping in to check for an update. I think it's normal to miss his leg (for both of you) and wonder what may have been. But I love how forward-thinking you both are. Such inspirations.

    Thank you for being so open and thoughtful in your responses. Really puts things in perspective. I think so many people see weddings as invites and fluffy dresses, but you are really, really demonstrating the "for better or worse, in sickness and in health" part. You are very lucky to have each other. You are in my thoughts daily.
    So much this. That's the stuff that really really matters in the end. The love you and your FI have for each other is truly inspiring. It's the stuff that real marriages are made of. Thank you for sharing it with all of us, @spockforprez. :)

  • sarahufl said:
    Just popping in to check for an update. I think it's normal to miss his leg (for both of you) and wonder what may have been. But I love how forward-thinking you both are. Such inspirations.

    Thank you for being so open and thoughtful in your responses. Really puts things in perspective. I think so many people see weddings as invites and fluffy dresses, but you are really, really demonstrating the "for better or worse, in sickness and in health" part. You are very lucky to have each other. You are in my thoughts daily.
    This made me cry. (In a good way.) Thank you. ❤️❤️
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  • I will write a longer, mostly positive update later but for now please enjoy this photo of my FH coloring LOL (and wow I need to redo his braid!)


    Love it! Coloring is good for the soul.

    You both really are an inspiration.

    image 

  • spockforprezspockforprez member
    1000 Comments 500 Love Its Third Anniversary Name Dropper
    edited March 2016
    Having an incredibly rough couple of days. Right now we are in a bit of a whirlwind. FH was transferred out to "the floor" - meaning the main hospital, not ICU or step down. We weren't prepped for this at all, the nurse just showed up at noon and asked me to pack up our things to be moved. He got to the new room about 2pm.

    It's awful. I know he is in good condition and no longer needed to be in ICU and there were more urgent trauma cases who needed his bed. Totally understand that and they should get the care they deserve. But the staffing ratios and the lack of attention is this unit is just totally insane. He has a catheter again now and NO ONE emptied the bag all day. I finally noticed it at 9pm and it was nearly full to bursting, they are supposed to be emptied when they get to halfway. We had to page someone to come. No one came to his room to turn him in bed (and he no longer has the airbed that inflates and deflates to help with pressure sores), no one came to put him in the chair, he had to ask for his meds, we waited 45 minutes to get ice water. I realize that there are a lot more patients in units like this but my poor FH with only two working limbs can't do very much for himself. He can't sit up, he can't move himself in bed, he can basically only reach for whatever is on his table, IF his table is within his reach, and that's it.

    I'm honestly shocked that his doctors approved him to come to this level of care. There's got to be a middle ground between ICU and being left alone for hours and having to page for literally everything including basic care like emptying urine bags. I am staying at the hospital with him tonight because he is so upset and discouraged about the situation - and my sweet, brave, positive FH has barely uttered a single fucking complaint this whole time so you know it's bad.

    He hasn't been sleeping well since moving to step down (Friday night). He keeps being put on these T-bone rooms where he's directly at the intersection of two halls. And we've had two changes of roommates since we got here 10 hours ago. Their TV never goes off. I don't know how he is expected to heal from his traumatic injuries and related surgeries without being able to rest. Like right now his neighbor is here for a bowel obstruction and he can sit up, get out of bed, walk himself to the bathroom... how in the fucking hell is he sharing a room with someone with only two functioning limbs? How can FH not be a higher priority than that? 

    We shared some pretty strong concerns with the night nurse (who is definitely better than the day nurse, at least) but she is basically powerless. She offered to page the doctor on call but FH would prefer to speak with the doctors who are assigned to his case so he wants to wait until morning. At minimum we need a private room - I know everyone wants a private room but I think FH is a special case. He will be in the hospital at least three more weeks, he cannot go that whole time with fitful rest. I don't really know what to do and I'm so frustrated with myself because I cry when I'm angry so I could barely speak to the nurse. I want to be an advocate for him but there is a learning curve. We are just shellshocked. The care we received in ICU was so attentive, swift, efficient, organized, and, well, caring, we are flabbergasted at the contrast. Again - completely understanding that he does not need "intensive care" anymore because his life is not in danger and he is stable. Just wondering why the fuck we have been hung out to dry. I am feeling so defeated and hopeless. I knew the nursing home phase of things would fucking suck and be depressing, but I thought we'd be okay at the hospital. My poor, poor, poor, poor FH. I am so upset I can barely even express it.

    In addition to all this hot mess today, yesterday I was treated like absolute dirt at both FH's bank and our bank while trying to set up the POA documents. My car is having issues so I had to leave it at our house and drive FH's car back, which has had the check engine light on permanently for years so knowing my luck it too will shit the bed. I called six nursing homes to discuss admission and couldn't talk to a human being, I had to leave messages, NO ONE called me back. I told myself I would follow up every day until I got through but with the clusterfuck above, I didn't have a chance today. Tomorrow I have to do a bunch of shit trying to scan a bunch of mail to send to the lawyer so he can OK it before we sign it as well as try to figure out the logistics of the wedding (we cannot have it in this utter shithole of a double room so trying to use the hospital chapel and need FH to be cleared to get in a chair and leave the floor). And get my wedding dress to my FSIL's mom's house to get a hook repaired. And be here to accommodate visitors tomorrow night. And meet with FH's doctors in the morning to see if we can get this situation remedied. 

    What I need is a good night's sleep. (Honestly, sorry for TMI but what I need is to get fucking laid, but thanks to a selfish, reckless, careless driver, I won't be able to do that for months.) Can't even have that because I'm in a hospital chair with a neighbor who's watching TV and complaining about being denied food due to surgery tomorrow. I cannot tell you what I would give - there's nothing on this earth I wouldn't give - to be at home with FH doing ANYTHING. Fighting, being miserable about my old shitty job, scrubbing the toilet with a toothbrush, eating flakes of lead paint, fucking anything.
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  • As a nurse, all I can say is advocate. Unfortunately, the squeaky (but nice ... as I know that you are being) wheel gets the grease. Basic hospital units are not designed for helping people get better. Every room should be private to decrease infection rates, ensure privacy and encourage family presence. I would document every concern and ask to speak to the nursing manager. Urine bags absolutely should be emptied at shift change (3 changes a day on most units, 2 minimum). Concerns are not punitive, but a way to highlight issues that often are easy to fix. I'll really hope that a private room becomes available and that this was just a brief blip of hospital horribleness in a sea of great recovery. 
  • Oh I forgot to say yesterday I talked to one of the ladies at the scene with my FH on the day of the accident. We have been getting to know each other on Facebook and I really love them. (There were two of them and they are friends.) They were FH's angels. But the conversation was so hard. She obviously needed to talk, and I totally feel for her because if I witnessed something so horrific I would need to as well. But she gave me details I really didn't need to know. Gruesome, awful, horrible things. Things that made me realize how miraculous it is that my FH is alive but that no one should ever have to hear about, much less live through. I told my mom and my aunt (the one I'm living with) so that I didn't have to bear the burden alone but I don't know if I can tell anyone else, especially not his mom. 
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  • Bad days are going to happen. Let them. 

    My sister is a medical social worker so this is her advice. He has a social worker assigned to him; find that person and lay out your concerns and complaints. It is their job to address these issues and advocate on your behalf for the team working with him. It is also their job to find a nursing/skilled nursing home for him. I would ask them for a list of homes that have agreed to accept him and then research them for yourself. My sister is a big fan of using Medicare Ratings as a guide and says not to accept anything less than 4 stars. 
    image
  • spockforprezspockforprez member
    1000 Comments 500 Love Its Third Anniversary Name Dropper
    edited March 2016
    We've paged his team this morning (the rounding doctors came by but he wants to speak to the surgeon) so hopefully we can get a consult with them in the next hour. If not, I will contact our social worker to ask about patient advocacy. The night nurse was better than the day nurse, she emptied his urine bag unprompted this morning. And it's not necessarily that the care he is receiving is bad or incompetent (although I'm still pissed about the urine bag), it's just not frequent enough. I'm convinced there's a happy medium somewhere. If we were going home (or to the nursing home) in 2-3 days I'd say fuck it and deal. But a minimum of three weeks and possibly more... if condition remain the same, I can't imagine it.

    Bad days are going to happen. Let them. 

    My sister is a medical social worker so this is her advice. He has a social worker assigned to him; find that person and lay out your concerns and complaints. It is their job to address these issues and advocate on your behalf for the team working with him. It is also their job to find a nursing/skilled nursing home for him. I would ask them for a list of homes that have agreed to accept him and then research them for yourself. My sister is a big fan of using Medicare Ratings as a guide and says not to accept anything less than 4 stars. 
    They did give us the list - we are just trying to set up tours and discuss admission. No one has agreed to accept him yet because his transfer date is unknown, I'm sure there's no way they could say whether or not a bed would be available. ETA also thank you for the tip about the Medicare Star Ratings!

    His current neighbor has turned out to be a pain pill addict (may explain the bowel obstruction) and is on the phone every 90 minutes (all night long... I only dozed maybe an hour or so on and off between 2:30 and 6am), screaming at the nurse that it's an emergency that he receive his pain pills immediately. They have started answering his questions then immediately hanging up before he can complain more LOL. I shouldn't laugh because if they were doing it to us I'd be furious but I guess sleep deprived me is a bad person and thinks it's funny.
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  • ernursej said:
    As a nurse, all I can say is advocate. Unfortunately, the squeaky (but nice ... as I know that you are being) wheel gets the grease. Basic hospital units are not designed for helping people get better. Every room should be private to decrease infection rates, ensure privacy and encourage family presence. I would document every concern and ask to speak to the nursing manager. Urine bags absolutely should be emptied at shift change (3 changes a day on most units, 2 minimum). Concerns are not punitive, but a way to highlight issues that often are easy to fix. I'll really hope that a private room becomes available and that this was just a brief blip of hospital horribleness in a sea of great recovery. 
    With my hospital experiences, I agree.  It's sad that we need to watch out for ourselves and be pushy, but it's a reality.  As patients (or family of patients) we/you really need to stay on top of things and not get lost in the shuffle.  Several years ago I had a major back surgery.  A couple weeks later I ended up with infection.  After looking at hospital records, we determined that they failed to give me all the post-surgical antibiotics that surgeon had ordered. I had another surgery for infection.  It was holiday weekend and the doctor-on-call failed to renew my antibiotic order... it was 3 days before I noticed that they weren't giving me the medication and said something to them. When my surgeon came back, he was so furious that I'm not sure I had never heard anybody yell so loud. Well, a month later the infection returned and I was back in hospital.  This time we were more on top of watching what they did.  So, it only took me a few minutes to notice that one of the medication bags they gave me was a different color than normal.  I looked closer and it had someone else's name on it! Luckily, it wasn't anything dangerous and I didn't have any negative reaction to it. But, we learned very quickly during all that to keep an eye on everything.  Write everything down and keep records of your care. We shouldn't have to do that and should be able to trust our medical providers, but they are often understaffed and overworked and things do fall through the cracks.  So, unfortunately, we have to keep an eye on things ourselves.

    image 

  • Definitely advocate.  Your FI's Foley bag should be emptied on time, and he needs to be turned every 2 hours to prevent pressure ulcers.  If the nurses are not doing this but still documenting that it's being done, that's a huge deal.  Talk to the charge nurse and the social worker.  If you find that there is a nurse that consistently provides poor care, you can refuse to have them as your nurse.  


    image
  • Having an incredibly rough couple of days. Right now we are in a bit of a whirlwind. FH was transferred out to "the floor" - meaning the main hospital, not ICU or step down. We weren't prepped for this at all, the nurse just showed up at noon and asked me to pack up our things to be moved. He got to the new room about 2pm.

    It's awful. I know he is in good condition and no longer needed to be in ICU and there were more urgent trauma cases who needed his bed. Totally understand that and they should get the care they deserve. But the staffing ratios and the lack of attention is this unit is just totally insane. He has a catheter again now and NO ONE emptied the bag all day. I finally noticed it at 9pm and it was nearly full to bursting, they are supposed to be emptied when they get to halfway. We had to page someone to come. No one came to his room to turn him in bed (and he no longer has the airbed that inflates and deflates to help with pressure sores), no one came to put him in the chair, he had to ask for his meds, we waited 45 minutes to get ice water. I realize that there are a lot more patients in units like this but my poor FH with only two working limbs can't do very much for himself. He can't sit up, he can't move himself in bed, he can basically only reach for whatever is on his table, IF his table is within his reach, and that's it.

    I'm honestly shocked that his doctors approved him to come to this level of care. There's got to be a middle ground between ICU and being left alone for hours and having to page for literally everything including basic care like emptying urine bags. I am staying at the hospital with him tonight because he is so upset and discouraged about the situation - and my sweet, brave, positive FH has barely uttered a single fucking complaint this whole time so you know it's bad.

    He hasn't been sleeping well since moving to step down (Friday night). He keeps being put on these T-bone rooms where he's directly at the intersection of two halls. And we've had two changes of roommates since we got here 10 hours ago. Their TV never goes off. I don't know how he is expected to heal from his traumatic injuries and related surgeries without being able to rest. Like right now his neighbor is here for a bowel obstruction and he can sit up, get out of bed, walk himself to the bathroom... how in the fucking hell is he sharing a room with someone with only two functioning limbs? How can FH not be a higher priority than that? 

    We shared some pretty strong concerns with the night nurse (who is definitely better than the day nurse, at least) but she is basically powerless. She offered to page the doctor on call but FH would prefer to speak with the doctors who are assigned to his case so he wants to wait until morning. At minimum we need a private room - I know everyone wants a private room but I think FH is a special case. He will be in the hospital at least three more weeks, he cannot go that whole time with fitful rest. I don't really know what to do and I'm so frustrated with myself because I cry when I'm angry so I could barely speak to the nurse. I want to be an advocate for him but there is a learning curve. We are just shellshocked. The care we received in ICU was so attentive, swift, efficient, organized, and, well, caring, we are flabbergasted at the contrast. Again - completely understanding that he does not need "intensive care" anymore because his life is not in danger and he is stable. Just wondering why the fuck we have been hung out to dry. I am feeling so defeated and hopeless. I knew the nursing home phase of things would fucking suck and be depressing, but I thought we'd be okay at the hospital. My poor, poor, poor, poor FH. I am so upset I can barely even express it.

    In addition to all this hot mess today, yesterday I was treated like absolute dirt at both FH's bank and our bank while trying to set up the POA documents. My car is having issues so I had to leave it at our house and drive FH's car back, which has had the check engine light on permanently for years so knowing my luck it too will shit the bed. I called six nursing homes to discuss admission and couldn't talk to a human being, I had to leave messages, NO ONE called me back. I told myself I would follow up every day until I got through but with the clusterfuck above, I didn't have a chance today. Tomorrow I have to do a bunch of shit trying to scan a bunch of mail to send to the lawyer so he can OK it before we sign it as well as try to figure out the logistics of the wedding (we cannot have it in this utter shithole of a double room so trying to use the hospital chapel and need FH to be cleared to get in a chair and leave the floor). And get my wedding dress to my FSIL's mom's house to get a hook repaired. And be here to accommodate visitors tomorrow night. And meet with FH's doctors in the morning to see if we can get this situation remedied. 

    What I need is a good night's sleep. (Honestly, sorry for TMI but what I need is to get fucking laid, but thanks to a selfish, reckless, careless driver, I won't be able to do that for months.) Can't even have that because I'm in a hospital chair with a neighbor who's watching TV and complaining about being denied food due to surgery tomorrow. I cannot tell you what I would give - there's nothing on this earth I wouldn't give - to be at home with FH doing ANYTHING. Fighting, being miserable about my old shitty job, scrubbing the toilet with a toothbrush, eating flakes of lead paint, fucking anything.
    I'm very sorry you and your FI are going through all this.

    Continuing to send good thoughts, prayers, and hugs.
  • We talked with three sets of doctors and a set of nurse practitioners (one who took care of him on ICU) this morning and we are feeling better about things. I think we were just so ill-prepared for the move (the nurse actually said there is a pamphlet they are supposed to give you to explain that your level of care is changing pretty drastically and how to order food, etc.) and shocked and emotional, feeling like he was forgotten. And the room is super hot so that makes us all uncomfortable lol.

    Anyway, they basically said a private room is a long shot because they are so limited and used for those with flu or other contagious diseases. Totally reasonable. Sucks, but it makes perfect sense. They are still trying, though. One of the social workers came by and said she is advocating for him to have one on a different floor. The trade off there is that most of the trauma nurses are on the floor he's on now so we don't want to compromise on care. FH really wants to sleep without pharm help so we'll give earplugs a shot, but I will encourage him to accept help if it keeps on. 

    The nurse practitioner said she will speak with the charge nurse and maybe consider upping his level of care back up to step down, without moving him, and that way he may be able to get a dedicated nurse with only 2-3 patients instead of 5. They understood what we were saying when we said he's basically only got one limb (his right leg can't bear weight until his pelvis is healed) and they agree he needs more frequent care, especially movement and turning. He also got visits from both occupational and physical therapy so we've got a brand new set of exercises to do 4x per day and that should help with moving in the bed. I have also been able to do small movements and adjustments when he uses his trapeze to help pull himself. 

    As far as the foley bag, I think FH just puts out so much more urine than other patients that their schedule for changing the bag is not an issue for anyone but him. I will monitor it and page as needed to take care of that. 

    Mr. Pills took his noisy ass and left the hospital against medical advice earlier today, ha. So far he doesn't have a new neighbor yet.

    FH may go to OR tomorrow for the initial pelvis surgery. The surgeon said that is a "moving target" depending on his white count (which has remained elevated but trending downward the last few days). 

    With my hospital experiences, I agree.  It's sad that we need to watch out for ourselves and be pushy, but it's a reality.  As patients (or family of patients) we/you really need to stay on top of things and not get lost in the shuffle.  Several years ago I had a major back surgery.  A couple weeks later I ended up with infection.  After looking at hospital records, we determined that they failed to give me all the post-surgical antibiotics that surgeon had ordered. I had another surgery for infection.  It was holiday weekend and the doctor-on-call failed to renew my antibiotic order... it was 3 days before I noticed that they weren't giving me the medication and said something to them. When my surgeon came back, he was so furious that I'm not sure I had never heard anybody yell so loud. Well, a month later the infection returned and I was back in hospital.  This time we were more on top of watching what they did.  So, it only took me a few minutes to notice that one of the medication bags they gave me was a different color than normal.  I looked closer and it had someone else's name on it! Luckily, it wasn't anything dangerous and I didn't have any negative reaction to it. But, we learned very quickly during all that to keep an eye on everything.  Write everything down and keep records of your care. We shouldn't have to do that and should be able to trust our medical providers, but they are often understaffed and overworked and things do fall through the cracks.  So, unfortunately, we have to keep an eye on things ourselves.
    I am really sorry you had to go through that, what a shitshow! Other than a couple mishaps with his diet order and the poor transition from ICU to the floor yesterday, we are actually very happy with his care in terms of his pain control, being able to ask for or discontinue meds depending on his needs, communication from the nurses in terms of answering all our questions or connecting us with doctors or NPs on request, staying fairly organized through shift changes, etc. I will definitely still stay on top of it, though. I would hate for anything like that to have to happen unnecessarily, especially due to poor organization or other human error.
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  • That sounds beautiful, spock. Really. I'm so happy for both of you.

    My mom joked once that H and I were lucky to have each other because "no one else would want either of you". You and FI are so lucky to have each other because very few people would have been able to be as grounded and positive as you two are and I'm sure you're both feeding off each other's attitudes.

    Image result for someecard betting someone half your shit youll love them forever
  • That sounds like an awesome wedding you have planned, Spock. So excited for you both! Can't wait to see pictures!
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  • You wedding sounds perfect! Please post pictures!
  • Your wedding plans sound amazing!!! You'd better AW the shit out of that on here after it's all said and done. ;)


  • So for me, I went back and forth, but I'm saying fuck it and wearing my big dress, and will have my flower crown and bouquet as well. The florist agreed to credit the deposit toward those two things for us to use now, since we won't need them at the celebration party later. So we'll just pay the balance of the contract and get lots of nicer, upgraded table arrangements instead of bridesmaids bouquets, bouts, and aisle markers.
    After your bridal shower post I was wondering about this and I thought fuck yeah for you when I read you still plan on wearing your dress.  

    Your dress story was so helpful to me when I started looking and I remember how happy you were to find it!  Wear the hell out of that damn dress!


    image
  • Sounds like you have something wonderful planned! Very happy for you two! I haven't posted yet, but have been following your story and am continuously in awe of you and your FI. You are both amazing!
  • sounds like an awesome plan for the wedding! Can't wait for photos.
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  • Thanks for the updates. I'm glad that you've been able to talk with his healthcare team about options. Communication is probably the most important thing. I look forward to updates on your wedding and hopefully seeing a picture. I hope that it is a beautiful day :)
  • That sounds beautiful. 

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