Let’s just not make up data here

I’m not going home tonight. I’ve been eager to, keeping a list of what was needed (from me: keep blood pressure and oxygen saturation high enough and temperature low enough; from nursing staff: order oxygen machine and have someone explain it to patient; from nurse: nebulizer; from doc: write prescription for antibiotics; and from onc docs, a yea verily approving my status at the end of it all), but at the last, the lead oncologist said, “I know you have a great support system at home and you really want to go, but I really don’t want you to leave. What would it take for you to stay another night?”

My medication needs to be on a better-kept schedule, I said, without missing a beat.

When Kristen and I arrived at the ER, I gave the check-in clerk a list of my meds with dosages and times clearly marked. The clerk took the paper and carefully copied what she needed onto her form. The form was put in my file and used to tell the nurses when each of my regular medications was due.

Except – except – that when I was shown that form tonight, I saw exactly what must have happened. The front desk clerk actually wrote down the meds, dosages, and how many times the pills were to be taken daily, not the times themselves. Then, when I was admitted, someone else translated “twice a day” to 7 a.m., but “three times a day” starting at 6 a.m. The third must have become “upon waking,” so that the three pills I take together were delivered throughout the early morning. The last set of pills? Didn’t happen, as I had to ask for them myself.

This becomes particularly unnerving when pills – including the narcotic that sent me into crazy withdrawal this weekend – are delivered early, late, and when it’s convenient, as she put it. “It doesn’t matter that exactly when you take it. I have half an hour before and half an hour after that to get it to you.” This last was said as she delivered the pills 35 minutes early, along with a 25 minute late prescription that had been missed entirely earlier in the day. Now narcotics are not to be messed with, so while I compliantly took the others early (or late?) I refused to take those pills until 2:00 as scheduled. (My doc said I was right about that – and he made a quick stop at the nurses’ station afterwards, hopefully solving the problem.)

Being in the hospital is no fun, but it’s made even worse when you don’t know if the pills you’re being given are the right ones at the right times.

I don’t know what to recommend to fix this, though – bring two copies of the med list and insist that one be put directly in your chart?

43 Responses to Let’s just not make up data here

  1. YP says:

    That’s frustrating. The nurses and doctors really need to pay more attention to that. It’s probably hard for you to remember it all too, esp. if you’re feeling weak. I think it would be a good idea to have a copy handy so you could show the nurse, and also to help you keep track of the medicine schedule. Anyway, sorry to hear that you’re in the hospital, hope they let you go home soon. Thanks for writing – I get so worried when I don’t hear from you in a while. Take care!

  2. I understand the concept of managing your own care when you’re in the hospital and being in charge of your treatment, but that is ridiculous. Medical professionals should know better than to mess with an established schedule, and that you aren’t in the hospital to be an inconvenience to them – they are there to serve you!

    So sorry you didn’t make it home today, but I’ll continue to keep everything crossed that you can leave early tomorrow. I hope you can manage to get some pain-free sleep tonight.

  3. Sorry Susan. THat sounds totally frustrating!

  4. Linda Lawrence says:

    Sorry your hospital stay has been so frustrating! When will they ever learn? You are in our thoughts and prayers!

  5. Catherine H Myers says:

    Ugh. That kind of medication messiness in the hospital has happened to my family members too. It’s unnerving, to say the least. Hope you have a restful night and get sprung tomorrow. Sending love and peace to you.

  6. Thanks! I know! I have stage IV breast cancer with pneumonia that they were afraid was turning into sepsis! And I have to be alert enough to refuse doubles and ask for missed medicines?

    I’m frustrated. But at least I’m finally able to write this down. Home tomorrow, I hope.

  7. Editdebs says:

    Saying some prayers you go home soon.

  8. I hope they’ve sorted it out! How annoying and potentially hazardous. Lots and lots of love to you, I hope you get a good sleep and can go home tomorrow. Huge hugs!

  9. I’m glad you have a space to write it down. I’m frustrated on your behalf.

  10. This was a big problem with Daddy, as you probably remember. Parkinson’s meds are on a very strict schedule, and the hospital staff didn’t give two hoots about following it. Frustrating to say the least.

    I say let Kristen take them on. Rawr. Go get ’em.

    • A big part of the problem here was that I’m a cancer patient on a ward other than oncology. No worries. We got it fixed and this morning’s fun nurse and I think it may be helpful for cancer patients, the chronically ill, and others with time-critical dosings to provide a copy of medication dosages and times to the floor nurse upon admittance as well.

      • sutari says:

        And if you can be that organized, take a PICTURE of every pill (both sides even) and have that on your schedule chart. That way you can tell at a glance if you have the RIGHT meds, as well as the right times for meds.

        I know that whenever I pack up OTC stuff (Ibuprofen, Tylenol, whatever) in little travel containers I quickly realize that I have forgotten which is which… especially since we tend to buy CVS-brand generics.

  11. Lisa says:

    On behalf of all nurses out there, I would like to offer my heartfelt apologies. That kind of nursing behavior is totally unacceptable irresponsible, and is reportable, actually. The hospital needs to know how their med administration is being screwed up. The thing they teach you in nursing school over and over ad nauseum, is the importance of being accurate with patient’s medicines. Why nurses get slack about this I have no idea. I hope you get to go home tomorrow Susan.. Lots of hugs…and again, so very sorry for the med screw up.

  12. Oh, sweetie… I am so sorry. Thinking of you and praying hard, as always. xoxoxo CGF and Girlies 3

  13. Glad to hear from you, but sorry you’re in–well, my mother called it, the horsepital. She also referred to my office as my orifice. Both were intentional; both made me laugh.

    I empathize about the meds , etc. I had something similar when I was in the ICU after the cerebral aneurysm. It does help to be a bit of a bitch–or have a friend to do it for you. I’d vote for a second copy of your meds that you have with you at all times.

  14. SO happy to see you pop up in my reader, I literally squealed with joy.

    I wonder if you have the meds already just keep them with you and threaten to take them yourself? I know that worked for me once, but clearly I was not on the sort of medications you need.

    LOVE YOU!

  15. magpiemusing says:

    Gah. I wish you lots and lots of strength, to fight your battles internal and external. Gah. Love to you, Susan.

  16. ROBsLab says:

    It’s strange really. I could think “what made them become a nurse?” or “why are they a nurse?” to a lot of our nurses because they really do not have a caring nature in them at all.
    Thankfully, I know two people who are nurses and care for their patients well. It’s just a shame they can appear to be in the minority (for various reasons). But enough about that before I start to ramble.🙂

    Good to know you were immediately able to state what you feel should be done to keep you there. Here’s hoping they stick to it!

    I think I would have added “and 1 million dollars” at the end just to see his reaction.😀

    Considering they seemed to have completely changed what was written, re-write the details again and tell them to use the copier so that each nurse can have a copy including yourself and one at the end of the bed.
    Also, see if your hubby can print the list on an A1 piece of paper and stick it to the entrance of the room you are in. Oh, and another copy for the end of the bed.
    If that and all else fails, write it on your forehead.😉

    On a serious note, aye. It’s annoying when you feel they have completely ignored your needs and messed around with a serious situation, just so it “fits” around when they can be bothered to walk to your bed. You gave them the details, so why mess around with it? Giving them what could be potentially serious consequences.

    Here’s hoping you can get back to the comfort of your own home soon for those hugs from Little Bear & Widget including your husband and all new moments together.🙂

  17. Betty Wilson says:

    Hoping and prayering that you will be out ASAP. Don’t worry about making a fuss with the staff, do what you know is right.

  18. Stella says:

    I am going to rant a bit here but wish to preface it with how much I generally respect and admire the difficult job of nursing. That being said… When I had my mastectomy I noted the very large, red sign above my bed that said “NO BP / STICKS IN RIGHT ARM”. Somehow, however, every single nurse, without fail, walked straight to my right side to take my blood pressure. Every time. Some time in the middle of the night I was commenting on this to the latest nurse coming at my right arm with the BP cuff. She was wonderful and proactive. She quickly whipped out her magic marker and graffitied my right arm with the same note.

    I seriously love me some nurses and owe them a load of gratitude for the wonderful care I’ve received over the last 6 years… but still…

  19. KC says:

    Glad you are almost out of there! In the future, I’d specifically tell your admitting physician (only doctors can order the meds and how often; nurses follow the orders as written) that you would appreciate the times of your pain medications to be at the same times as you take at home. Reason being that there are standard default times for administering twice-a-day or three-times-a-day etc medications so that nurses are able to make their rounds, pharmacies can regularly bring up the meds, etc, to make systems run smoothly for an entire ward. BUT, that’s not to say that exceptions can’t be made for specific reasons. Most medications have a lot of leeway in terms of administration times – others, as you know, not so much.

    Hugs

  20. Diane Krapf says:

    oh my goodness, Susan. Where is the care? Where has the quality of care gone? They are dealing with life and death, not a hip replacement. It always comes back to advocating for ourselves. I’m so happy you can return home to the loving care of your family and friends.

  21. Elaine says:

    Incredible. I hope this gets fixed fast.

  22. Stimey says:

    Ugh. That’s appalling. I wish you were home, but I hope the doctor helped straighten things out for you. Love you.

  23. sending hugs and prayers that you get sprung tomorrow. Same thing happens with my dad who is in a nursing home with Parkinson’s. They also tell him that they have a 30 minute window and they are just too “busy”. It’s so incredibly frustrating and sad.

  24. Joan C. says:

    Maybe tattoo the schedule on the ass of the nurses. Seriously. You almost need to bring along a private nurse and have them 24/7. I think with all the advances and bar codes and beeps used to BILL for medications that they could flippin’ get them TO YOU. ON TIME. Will pray for good oxygen levels for you, but also for the nursing staff so they can function efficiently. For pete’s sake. Really.

  25. Chrissi says:

    With our son, that’s exactly what we did. Gave one to admitting/ER and one for his chart..

    Sending prayers and love..

  26. Johanna says:

    Stick to your guns, Susan. You are the expert on when you need to take your medications. The nurses are dealing with the “general rules,” which don’t apply to you. You have the experience of, unfortunately, having to deal with the issue of your medication for years. Make them comply with what YOU need and don’t back down.

    It’s ironic that when medidine has become so complicated the patient (or the patient’s family) has to monitor the medical care to make sure things are done right. You are the most important person, make them do what you need.

    God Bless you.

  27. Rabbi David Novak says:

    Important to have REDUNDANCY in the hospital with you. As a rabbi I often go to hospitals to make sure that what one doctor is told is relayed to nurses and so forth. I hope that there are those who will support you in getting the medical system to be your ally.

  28. Amie aka mammaloves says:

    Now I know you’re feeling a little better. Keep those folks in line! I love hearing that!!

    Sending smooches!

  29. Susan this is horrifying. It’s one thing with a one-time patient and quite another with someone who knows the ropes and clearly has a reason for her detailed and careful list. It’s just another thing to try your fierce determination.

    We are all praying and hoping that you will be back with the kids as soon as possible. I know that’s the best medicine of all.

  30. Two copies, insistence, and the person who takes you to the hospital carries a bat. That sucks, Susan. It happened to Stu, too. Overall, that’s a great hospital, but whoever is with you has to ride them.

    Hope to hear you’re home soon.

  31. Karen G says:

    wrt going home:
    I hope so too.
    So sorry that you’re going through this.
    Enough said.
    Karen

  32. Oh Susan! How frustrating! I love the idea of 2 copies along with Susan’s suggestion of having whoever brings you to the hospital needs to bring a huge bat! I hope you are able to come home soon!

  33. camila says:

    Praying for you. Amazed by how you cope with these events without being smashed by them. You are truly inspiring and I am grateful I found your blog on the net. I wish you better days with your family!

  34. Cassie says:

    Being a nurse who has admitted many patients, the computer entry for the meds which is sent to the pharmacy doesn’t have exact times – meds are entered as “bid”, “am”, etc. The pharmacy then decides when to time the meds based on Drs orders. Because so many hospitals like to work short staffed to “cut the fat” this also makes patient care more difficult, not to mention timely. Please help us advocate – we are stuck between a rock and a hard spot being expected to give great patient care with less resources (and I don’t mean only nurse resources). In your case, specify the exact times with your Dr, but please realize a nurse with 5+ patients may not be able to give your medicine at a certain time on the dot. Healthcare is no longer about care in alot of cases, but about profit. Good luck to you and you are your best advocate!!

  35. Susan, I am praying you go home as soon as possible! Perhaps several copies of the schedule would be helpful with one staying close to you in your bed (taped to your table, perhaps?) I think involving the doctor like you did was also probably very helpful. I’m tapping my shoes together for you and saying, “Susan wants to go home” three times! xoxoxo

  36. {sue} says:

    Hope you are home by tonight, but I’m mad that you have not had your meds when you needed them. I’m happy to be the person with the bat! (I’m also glad you had enough energy to write this – that’s a good sign.) Love you!

  37. Amanda says:

    Darn it. I remember, different scenario, but similar unwillingness to grasp the necessity for specificity, I had to stand sentry for my grandfather.

    I think duplicating the sheet makes sense. I also vote for Susan-loving bull dogs guarding you. Sorry, I always err on the side of passionate.

    xo to you.

  38. stardustdawn says:

    How hard it must be to have to advocate for your health care when you feel so dang lousy. I hope you have someone there who can do some of the following up for you so you can rest.

    Feel better soon!
    Get well soon!

  39. Anne says:

    Keep a small number of OxyContin pills somewhere in your personal stuff in case of emergency. I don’t know if they have you on them every twelve hours or 8 hours, the official schedule is 12 hours, but a lot of people find that doesn’t quite work, though most of them get pain not withdrawal, but withdrawal on a precise 12 hr schedule is not unheard of. A lot of hospitals will have an on call pain doc, even if it’s not really a specialist, they still should have someone they can get. I think you said you had seen a pain specialist, if possible have them and other doctors write you a note you can take with you places that says the schedule is important.

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  41. I’m sorry I didn’t reply to each and every one of you – I have read and reread your lovely comments, and I really appreciate your support – being in the hospital is a tough time these days, and I totally agree – patients really need an advocate with them if they can.

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