ChezPerky

So, I rarely make public posts about comments I receive, unless it’s to address questions that I receive frequently, so I then address them en masse so that readers are all in the loop.    However, this one was too good to pass up.  Perhaps some of you remember my “!La Penultima!” post in which I was desperate to get out of the hospital after a six day stay in my own private inferno.  I had received generally good and compassionate care in the hospital from my nursing staff.  But there were significant errors made as well, which frankly compromised my care.  I am happy to report that the hospital administration (charge nurse, director of perinatal services, and quality assurance manager) have taken these issues very seriously and responded appropriately in all cases.    Every health care professional at the hospital that I have spoken to about the issues that occurred during my stay made it clear that I, as a patient, am my own best advocate, and know the intricate details of my complex care better than anyone.

However, it appears that I may have offended some health care professionals that read my blog.  Apparently, I have maligned the entire nursing profession, and everyone in it.  If that truly is the case – I apologize.  I have great respect for nurses – and all medical professionals.  People don’t go into nursing for the glory of it all – or the money, for that matter.  Most people who go into nursing go into the field out of a desire to care for others.  This does not, however, mean that they are infallible, nor does it mean that I, as a patient, must always assume that nurses (or any other health care practitioners for that matter) always know more about my care than I do.  I do, however, assume that most nurses have more medical knowledge overall than I do.

So I received today this comment on my “!La Penultima!” post:

Sorry to hear your so sick. I also have HG and have been in and out of the hospital. However, I am writing cause I am so offended by your take on your health care. I am a  registered nurse. I went to college to get a degree and have my license in two states And like all medical professionals I have to keep up with the rapid changes in treatments and drugs. You are a frustrated sick person NOT a medical professional. Being sick and in the hospital even 100% time and reading all the Internet has to offer will never make you a medical profesional or even fully competent in your own care. Even if you’ve been through this before- medicine is constantly changing.  You are educating yourself- great! We encourage that but don’t think for one second you know even a smidge of what we have to learn. It’s true ( about the PICC lines) protocols have changed. All you need 20-40ml of 0.9 Sodium Chloride flushed forcefully in each lumen at least twice daily. Heprin is a serious drug.  Yes,  it used to be used and in some cases is till used for PICC lines in some places but that is quickly changing. Most hospitals have done away with this protocol because like I said heprin is a very serious medication- a blood thinner used in the prevention and treatment if DVTs. So, again sorry your sick and frustrated. I’m sick and frustrated, too. But don’t pretend to be anything other than that.

Note that the grammar and spelling errors are not my own – I didn’t change anything about the comment.  Of particular interest is this commenter, who is lambasting me for masquerading as a health care professional (which I have never done – I am married to a health care professional, but I have never said on my blog “I am a healthcare professional” nor have I said “all nurses are stupid and I know more about everything than they do”), can’t spell the name of “a very serious medication.”  For what it’s worth, the drug she’d intended to reference was heparin, not heprin.  For the record, I’m well versed in the issues surrounding heparin use, particularly in pregnancy, but more importantly, my husband (a pharmacist) is far better versed in the benefits and risks of heparin than most nurses (certainly he can spell it).  Furthermore, while heparin is, indeed, used for the prevention and treatment of DVTs (mind you, as a pregnant lady who wasn’t allowed out of bed, I was at risk for DVTs) – heparin has many other uses as well.  In fact, pregnant women with certain thrombophilias are commonly prescribed daily heparin (or heparin derivative) injections to prevent miscarriage and other pregnancy complications.  That is only one additional legitimate use of heparin – and there are many others.  Yes, heparin is a “serious medication”.  Truthfully, all medications are “serious medications”.  There aren’t any medications without any known risks or potential adverse effects.  With any medication, one should carefully weigh the potential benefits against the potential risks before taking it, particularly while pregnant.

I am well-versed about the required care and feeding of my PICC line.  My PICC line was put in by a hospital that has not moved entirely to saline-only flush lines, although the hospital I was inpatient in this month has moved to using only saline-only flushes.  So while the nurses may not have been familiar with using heparin for PICC lines, they could easily have consulted with my physician, or with the IV Therapy nurses.  Or, you know, they could have at least flushed my line with saline, which they also refused to do.

Anyway, look, I’m not saying I’m a healthcare professional.   But this statement:  “I’m sorry your [sic] sick and frustrated… but don’t pretend to be anything other than that” is the part that pissed me off the most.  I have never made any claims to being a healthcare professional.  I do, for the most part, rely on my healthcare team to provide good care to me.  That doesn’t mean that I should just sit back and shut up when I do know something isn’t right or that my care is being compromised.  It was pretty frickin’ egregious to blow through my vein by running a caustic medicine through a peripheral IV at five times the rate that was ordered.  Now, I know what my medication orders are, in part because my husband participated in getting those orders set up.  Do I know more about that medication than the nurses?  I do not.  But I do know that if it was ordered at 200ml/hr and a nurse infuses it at 1000ml/hr, she (or he) is doing something inappropriate with the potential to compromise my care.  I don’t have to go to nursing school to know how to read and follow directions.

In fact, this attitude of “listen to me, I went to nursing school and have a shitload more knowledge than you can ever pretend to have, you ignorant fool” is precisely what causes issues in patient care, frankly.   Healthcare professionals who acknowledge that patients know their bodies and protocols well tend to be the ones with the most successful relationships with their patients.  But the “I am all knowing and you are not” attitude gets healthcare professionals into more trouble than its worth most of the time.    So yeah, this comment touched a nerve.  First, because I don’t like the possibility that the majority of readers might have perceived that I was maligning the healthcare industry.  I worked for years in the healthcare industry and have worked as an EMT as well.  So I hope that this was a simple misunderstanding between me and just one reader.  But if the majority of you got the sense that I think all nurses are idiots (which clearly they are not – just as in any profession, many people are brilliant and some people are idiots), please forgive me if that’s what you thought I was saying.

I will not, however, apologize for advocating for my own appropriate care.  The fact is, I was absolutely 100% right about the things that went wrong with my care.  I should have gotten my medications when scheduled, and I frequently did not.  I should have had my PICC line flushed – at LEAST with saline if not heparin – and having not had it flushed at all caused me to have an unnecessary (and not risk-free) procedure to have a  new line put in (twice, actually, because the first time it went up my carotid instead of down to my vena cava).  I should not have had medication run through a peripheral vein at 1000ml/hr.  I don’t know everything about the nursing profession.  But I do know when my care isn’t appropriate.

And, because I’m now all pissy and riled up about this, I will include my (lengthy) response to this poster below.  Feel free to skip it, of course, but here’s what I wrote:

First, let’s be clear – I don’t get my medical information, particularly that about care and feeding of my PICC line, from the internet. My husband is a clinical pharmacist in a hospital (and he’s the one who helps SET protocols for drugs like heparin in hospital use, so when he tells me there’s a problem, I’ll trust him – certainly more than I’ll trust an anonymous commenter nurse, or otherwise, on my blog) and I received very clear instructions from the physician who put in my second PICC line. I have also worked as an EMT, though am not certified in the state where I currently live. EMT certification is not the same as nursing school. It focuses on emergency (obviously) care, not ongoing patient care. I am not suggesting that being an EMT has ever made me as knowledgeable as a nurse, but I *do* have an appreciation for the complexity of health care and I am, therefore, a medical professional, if not an RN. Truthfully, there’s a reason that there are multiple medical professions – doctors, nurses, pharmacists, etc. Because you CAN’T know everything and better to be very good at something very specific than merely moderately adequate at all things related to healthcare.

My first PICC line was a saline-only flush. My second PICC line was not – and if it wasn’t flushed with heparin (5ml) daily, it got occluded. My third PICC line, which only needed to be placed because of the occlusion from not being flushed incidentally, is a saline-only flush. Many hospitals are moving to saline-only flushes (hence the change in protocols). The hospital that installed my 1st and 2nd PICC lines use both saline-only PICCs and ones that require heparin. The hospital that I was inpatient in only uses saline only flushes (PowerPICC Solo) – so I certainly understand that the nurses were unfamiliar with flushing a PICC line with heparin, because it’s not a protocol that hospital uses, but I had a line that wasn’t installed in their hospital, and I had with me the written documentation of the protocol for my PICC line – so they didn’t just have to take my word for it.

The fact is, my regular antepartum nurses did not ONCE flush my PICC line with ANYTHING. Not saline, not heparin, not kool-aid. NOTHING. Even when I asked that it be done. Every one of the nurses on that floor told me “well, we don’t do anything at all with PICC lines. They don’t need to be flushed, and the IV Therapy team are the only ones who can deal with occluded lines.” The IV Therapists who saw me were fantastic. But they also said that the nurses who were providing my daily care were not following hospital protocols even for saline-only lines – as they require all PICC lines be flushed with 8ml of normal saline per day.

Heparin (which you spelled wrong, by the way) *is* a very serious drug. It has also received significant scrutiny since Dennis Quaid’s twins were given significant overdoses of heparin in the NICU. I don’t take it lightly, nor does my husband – you know, my husband the licensed pharmacist – who DOES qualify as a medical professional, even if I do not.

I do not know everything nurses know. I don’t claim to. But I am educated on my own protocols, not via the internet but via the nurse educators who have taught me how to provide self-care while on home bed rest. I have to provide my own care and feeding of my PICC line, IV-administered medications, IV Fluids, and my two infusion pumps. I am very lucky that I have a pharmacist husband who can take care of a lot of the little details that I frankly don’t have the energy to deal with right now, but I was still required to receive extensive training on my own self-care.

Whether I’m a nurse or not, I do know when I’m in a tremendous amount of pain. When a nurse runs Phenergan (a very caustic drug) through a peripheral IV at a rate of 1000ml/hour, when it should be run at 200ml/hr and I’m literally crying in pain, the nurse should absolutely not say, “Yeah, Phenergan always hurts.” She literally burned through my vein and the pain was excruciating. I will take all the contractions and kidney stones in the world over that pain – it was unbelievable. When the IV therapist came in a short while later, she was horrified. Nurses know a lot. They are very well educated. Nurses work extremely hard, and have to be very cognizant of a myriad of details. But nurses, like any other humans, are not infallible. Nurses, like everyone else, make mistakes. That particular mistake was completely uncalled for. When I spoke to the charge nurse the next day (very calmly, mind you – I wasn’t the one who demanded to speak to the charge nurse – in fact, I had avoided speaking to the charge nurse all week because I did NOT want to be in an adversarial relationship with my caregivers – it was my day shift nurse on my last day in the hospital who alerted the charge nurse to the issues that had happened in previous days) – anyway, when I spoke with her, I told her that it wasn’t that any one thing was so egregious, it was that I felt that there was no acknowledgment from anyone but the IV Therapists that I could possibly know anything. The charge nurse said that everything that had happened was inexcusable, and she wasn’t there to smooth things over, but to sincerely apologize.

Mistakes happen. I wasn’t upset about the first mistake. I wasn’t upset about the third mistake. Frankly, I wasn’t that upset about the phenergan rate (though I was in significant pain) – but my husband was furious, and rightfully so. It’s very difficult for a patient to know when things have moved beyond the normal “everyone makes a mistake” to crossing the line into negligent care. Bottom line, I wasn’t going to spend another night in that hospital if I didn’t have to, because by then I was just getting sicker and more frustrated.

You don’t know me. You only know the pieces of me that you’ve read on the internet. I was never unpleasant to my nurses. I worked hard to never be adversarial. Yes, I asked each nurse who came on shift to please flush my PICC line, but I did not argue with them when they said “we don’t do that.” I *would* however, correct them if they told me that the line didn’t need to be flushed – by providing them with the hospital documentation I received the day it was put in place. They didn’t have to take my word for it. Do I know how to administer mag sulfate? No. Do I know how to do a cervical check to know at what point I crossed the line from “perterm contractions” to “preterm labor”? No. I don’t have the foggiest clue. Can I do an fFN test for a patient? Definitely not (though I’d probably be better at that than a cervical check – no idea how nurses/doctors know what they’re feeling in there!). But I do know if a medication is supposed to be administered q6h, then it should be administered q6h. If I told a nurse that I was feeling very sick and needed my Phenergan they would say, “Oh, you want your Phenergan?” “yes, I was supposed to get it at 2pm”, “So…?” “So it’s 6pm now and I need it.” “Okay, so would you like me to get that for you?” “Yes please”. Typically, I’d then get it within the next 2-3 hours. I am not exaggerating. This was a daily conversation that I would have with my nurses. This was a scheduled, not PRN, medication, by the way. The fact that I went without multivitamins in my IV Fluids on some days was also inexcusable – everyone was fully aware that I was not eating or drinking anything, and clearly the multivitamins were not negotiable.

I apologize for offending you – I have high regard for nurses. I do not, however, have high regard for substandard care from any profession, including nurses. Like you, I am offended by YOUR tone (as you were with mine). You have made a number of assumptions about me which, frankly, are unfounded. I am very grateful that for things that were NOT related to my medications or PICC lines, my nurses, for the most part, were completely on top of things. At 4am my first night in the hospital, my contractions suddenly got extremely painful and close together and it was different than any other contractions I’ve ever had. Before I even had time to find the call button for the nurse, my nurse was at my bed side and on top of things. She did a cervical check, found that I had started to dilate and had the doctor on the phone two minutes later. Within 15 minutes of the contractions having escalated, I was on mag sulfate. That was nursing care at its best.

I am very sorry that you are suffering from HG – it isn’t fun and I know that all too well. I hope that you do not suffer for long and that you are able to stabilize and remain out of the hospital. I wish you a beautiful and easy delivery of your baby, and a complete resolution of your HG.

Regards,
Ms. Perky

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I have to test for ketones every morning, what with the hyperemesis and all.   Ketones, apparently, are not good for baby.  Until I started getting IV fluids with dextrose in them every day, I was spilling ketones like mad (150+).  I’m sure that contributed to my very rapid weightloss in the beginning of this pregnancy, and I’m sure having stopped the ketosis is the largest contributor of me having been able to remain relatively stable since.

Anyway, I got a new box of the ketosis test strips this week and I note, with some irony, that it highlights on the box, “Great for a low-carb lifestyle!”

Now that is an understatement if I’ve ever heard one!

Speaking of iron, my iron is still low and my OB practice is encouraging me to keep taking those iron supplements.  You know, the ones I can’t keep down on account of the hyperemesis?  Yeah, those.

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No, seriously, if you have a weak stomach, this probably isn’t the post for you – blood and guts and gore ahead…

So last night, Seth went to brush his teeth and I heard him making a funny sound and I asked if he was okay.

Seth:  “Yeah, it’s just that if you’re using mouthwash and then you suddenly sneeze?  It’s not so much fun.”
Me:  “Last night I threw up and freaked out because there was a pool of blood in the toilet.  Then I figured out I had a nosebleed”
Seth:  “Yep, you win.”

I will not tell you about tonight’s experience with the porcelain goddess, but suffice it to say, it was slightly more disturbing.

So … while we’re on the topic, the most common questions I get asked about this hyyperemesis thing are:

1.  Do you ever eat?
2.  Do you ever get hungry?
3.  If you’re not eating, how/what could you possibly still be throwing up?  (seriously, do you REALLY want to know?  Ick)

Answers:
1.  Yes.  I do occasionally try to eat something mild.  It has to be worth it, though, because it’s incredibly rare for me to keep any food down – and then it’s usually only a nibble.
2.  Yes, I do get hungry occasionally – but not often. I am pretty constantly nauseated so food usually isn’t particularly appealing.
3.  Well, there is the little bit that I do try to eat occasionally, the sips of water or gingerale I take to get my Procardia down, and so on.  But mostly it’s just stomach acid.  It’s disgusting and painful, and frankly is probably doing damage to my esophagus, but there’s not a lot of choice in the matter.

What?  I did warn you that this post is not for those with a weak stomach.  I did tell you there’d be some blood and guts and gore involved in this post!

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The other day I was on my way home from dropping J off at school, and I hit a huge pile of traffic a couple miles from home. With all the snow we got earlier in the month, lanes disappear without warning, roads are closed off so that dump trucks can haul away snow, etc. It does no good to get upset about it- it’s no one’s fault, and there’s nothing that we can do about it anyway. But try telling that to Washingtonian drivers. Sheesh. They’re all there honking, making rude gestures, scowling, screaming into their cell phones about the traffic.

I’m not above all that – I admit. But having no place to be, for the most part, these days has definitely given me some ability to just roll with it. I may not be totally comfortable sitting in the car for that long, but I get far less agitated about it. Still, it seemed like I was the only one around who wasn’t really angry at that moment. Until, that is, I noticed the driver on my left side. She was bopping along to whatever music she was listening to, clapping her hands, smiling wide, and belting out the lyrics with wild abandon. It’s been a long time since I’ve seen someone enjoying life with such wild abandon – and it’s really a breath of fresh air to see that.
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Yesterday, I had about an hour between when my nanny left for the day and when Seth and J got home during which I was on my own with the triplets.  I don’t get a lot of time with them these days – I can’t really handle being alone with them for long, and as I just don’t have a lot of energy, and being too active aggravates both my hyperemesis and my tendency to have contractions.

So I sat them down with some snacks and crayons/paper.  They had a good time, but eventually, I needed to stop sitting up, so I moved to the recliner, and the triplets kept bringing me books to read to them.  They curled up in my lap and smiled and giggled and just enjoyed being kids and having Mommy all to themselves.  It was lovely.

I realized that it’s been a long time since I’ve been able to just enjoy my children.  It was nice to be reminded that this is what it’s all about.  This is why I am willing to go through this hell that is pregnancy. Because I enjoy my children.  Because I wanted all these children and this beautiful family.  This is all worth it in the end

I think it’s important not to lose sight of the reason for all of this.   I love my husband.  I love the family we’ve created together.  I love that our adventure in parenting is moving on to a new stage.  I love my children.  My life, while not without complications, is pretty darned wonderful.

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So I was all geared to write about Nurse Ratched from my last inpatient experience at the hospital, but I’ve lost my fire for the topic.  Probably for the best, because well, I should probably learn to simply be more appreciative of the good things in life, rather than critical of the negative things.  But hey, before I get all holier-than-thou with gratitude for my many blessings and whatnot, let’s cut the crap and get to the real reason that I’ve lost my fire for writing about Nurse Ratched:  I have something far more annoying to write about instead.  Come on, you didn’t actually believe me about focusing on the positive, did you?  That’s Crazy Talk!

So earlier in the week, I had to go to the Emergency Room because there was Yet Another Issue With My PICC Line (YAIWMPL).  When I had the new line placed in the hospital, it was not sutured down (as my second line had been), but the nurse used a statlock to anchor the line.  I knew then that this was a recipe for disaster, as my reaction to the statlock adhesive was severe enough with my first line that it compromised the site and the whole line had to be replaced.  But the nurse at the hospital was not permitted to use sutures, and if I hadn’t been so stupid, I would have requested that she find a doctor or PA to do so in lieu of the statlock, but I’m a moron.

Shockingly (not), when my home health nurse came a week later to change the dressing, I had a severe, infected, skin reaction to the statlock adhesive.  And so I got sent to the ER.  Normally, I would go to the ER near my house, but my OB doesn’t have privileges there, so I wanted to make sure I was in the hospital where my OB has privileges in case any orders needed to be obtained.    It turns out, I hate the ER at SG where my OB delivers – the ER at my local hospital is MUCH BETTER.  Nevertheless, I got what I needed – my line was sutured down, and the statlock was thrown away for good (I hope).  However, I had a very bad experience because of the unprofessional conduct of the nurse supposedly “caring” for me.

I wrote a letter to the hospital administration, and I have been assured a timely response to my concerns.    The letter not only addresses the ER visit, but also summarizes some of my chief complaints from my inpatient stay as well.  I hadn’t been planning to write about the inpatient experience, but since I was writing again anyway, I figure it can’t hurt.  The letter follows (beware, it’s really long!):

To Whom it May Concern;

I am writing today because I have recently had two disturbing experiences at SGAH – both as an inpatient in the Antepartum unit, and as a patient in the Emergency Department – that I would like to draw your attention to.

I was admitted to the Antepartum Unit on February 3, 2010 due to preterm labor.  I also have severe hyperemesis, and am unable to keep any substantive quantity of food or drink down.  I was a patient for six days.  While overall I had a good experience with the nursing staff, many issues came to light while I was a patient.  It became clear that most nurses do not read medical records, but rather depend on “report” between shifts to understand patient needs and orders.  Unfortunately, this can result in a rather elaborate game of “telephone” where medications are missed, or incorrect, and orders are not clear.  I had several nurses who did not administer proper medications on time unless I asked directly for them.

Many nurses did not clean IV/PICC ports with alcohol before accessing them, there were days when I did not receive multivitamins in my IV Fluids because nurses assumed (even after I corrected them) that the previous shift had administered them.  I had an existing PICC line when I was admitted to the hospital, which required heparin flushes at least once per day.  However, nurses repeatedly told me that I was incorrect and that the line did not need to be flushed at all (with either saline or heparin).  I simply got told “we don’t do that.”  As a result, my PICC line became occluded and a peripheral IV had to be placed until a new PICC line could be placed.  When the IV Therapist came, she agreed that the line should have been flushed regularly – both with saline and with heparin.

The peripheral IV was placed in my right hand.  I experienced a significant amount of pain at the site, but nurses continually told me “IVs always hurt when they’re in your hand.”  While it is true that IVs in the hand are typically more painful, I have a lot of experience with IVs and this pain was not typical.  I was having routine infusions of both Phenergan and Ampicillin, which are both very caustic when running through a peripheral IV (they cause no discomfort running through a PICC line).  One of my nurses ran one of my Phenergan doses  (25mg diluted in 100ml of D5W) through the IV at a rate of 999mls/hour – five times the rate it should have been run! When the Phenergan dose was finished, the IV fluids continued at the same rate until I called the nurse and asked her to turn it down.  I was in tears from the pain – and the answer I received was “yeah, Phenergan always hurts going in.”    Later, when she ran Ampicillin through the line, I was again in tears from the pain.  Fortunately, the IV Therapist arrived around that time to place my new PICC line.  She stopped the infusion and pulled the peripheral line before placing the new PICC line.  Once the line had been pulled, I looked down at my hand and realized that it was swollen to about  4 times the size it should be; it took about 8 hours for the fluid that had collected to dissipate and for the swelling to go down.  That evening, the nurse that came on shift gave me my Phenergan, but not the dose that was ordered – she gave 12.5mg q6h.  When I questioned it, she said that hospital policy is that no more than 12.5 mg can be given.  Although I did not get relief with the smaller dose, I respect that she was following hospital policy.  What I want to know is why the nurses I’d had the five days’ previous did not follow hospital policy.

On my last day in the hospital, I spoke with the charge nurse, Marilyn, who responded appropriately and with great kindness and sensitivity to the issues that I had encountered during my stay.  She encouraged me to speak up, should I have another hospital stay with additional issues.  I appreciated her help and advice, but most of all, I appreciated that she didn’t make any excuses for the issues I had encountered, but simply offered her apologies and a sympathetic ear.    Marilyn’s wonderful approach left me feeling confident that the issues would be addressed and at the time, I felt no need to further address the issues.

Had that been my last negative experience at SGAH, I would not be writing this letter.  However, on February 15^th, I spent the afternoon in the Emergency Department due to a reaction that I had to the stat-lock anchoring my PICC line.  My previous PICC line had been sutured in place to avoid the skin reaction I had to the stat-lock adhesive, but the IV Therapist who placed the new line wasn’t permitted to use sutures, so I had a stat-lock to anchor the line instead.  I went to the Emergency Department because my skin reaction was so severe that it was a potential risk to the line.  The medical care I received in the Emergency Department was excellent.  My line was sutured in place to avoid further issues, and dressed in gauze to allow the skin to heal before my next dressing change.  Despite the excellent medical care I received, my experience overall was very poor due to the unprofessional conduct of the nurse attending to me.

First, I do not know her name, because her name badge was not visible (and I can’t help but wonder if this is intentional) and she never introduced herself to me.  She came to my bedside to determine what my needs were.  She asked if this is my first baby and I told her that I have a six year old foster son and two year old triplets.  She became visibly shocked and when I said I expected this would be our last, she said, “Well, I would hope so! After all these kids I would hope you’d be done already!”    While I recognize that few people in today’s society choose to have families of this size in this day and age, it certainly does no good to mock me for having chosen to do so.

She went on to ask whether my triplets are “natural” and I stated emphatically to her that this question is not only medically inaccurate (the correct medical term is “spontaneous”), but it is rude and hurtful to ask a mother such a question.  I further pointed out that asking me about the conception of my children is tantamount to asking about my sex life – this may seem a stretch, but imagine how unseemly it would be to ask a woman who had no fertility struggles about the specifics of her child’s conception – this would certainly seem intrusive and out of line, would it not?  Why should it be any different when a doctor and/or embryologist are involved?    She said, “Oh, it’s just that I find multiple births so amazing!  I don’t care whether they are natural or not!”  Yes, my children are amazing.  My triplets are a miracle.  Their conception has nothing to do with it, and I can’t reiterate enough that “natural” does not apply – ALL babies are natural, and certainly the embryologist who assisted us in our conception did not substitute a space age polymer for the usual requisite ingredients for making a baby.

Had this been the extent of my nurse’s unprofessional behavior, I could have overlooked it and attributed it to ignorance and insensitivity.  However, what followed was so egregious that I couldn’t possibly ignore it.   I was in a room with four patients, each of us separated by a simple curtain, so it was fairly easy to overhear the conversations of patients, visitors, and medical personnel.  The patient in the bed to my left was vomiting uncontrollably.  She was clearly uncomfortable and in a fair bit of pain.  While I do not know the cause of her hyperemesis, I do know that no matter the cause, persistent, intractable vomiting is never pleasant.   At one point, the patient began a new cycle of vomiting uncontrollably.  The nurse was in the process of placing an IV in the patient to my right.  When the vomiting started, the nurse started to giggle and then she said, “I’m sorry, I know it’s not funny it’s just…  I think somebody is being a wee bit melodramatic, don’t you?”

No matter what this nurse’s personal issues were with the patient, there is no excuse, under any circumstances, to make a disparaging remark about a patient within their earshot, and particularly not to another patient.  If she wants to wait until she’s off shift and gossip with her colleagues in the break room, by all means, don’t let me get in the way.  But to do so in front of several patients, feet from the patient who was suffering at that moment is inexcusable.

I appreciate your willingness to hear about my experiences at your hospital.  I am planning to deliver my baby at SG and I can only hope that I will never again encounter issues similar to the ones I recently experienced.

Regards,

Ms. Perky

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When I was about 11/12 weeks pregnant with the triplets, one of the perinatologists in the practice I was going to said that the best thing I can do for myself is to ensure that I learn to delegate.  “If someone offers help, get out a piece of paper, have them write down their days and availability, and TAKE THEM UP ON IT.”  I nodded.  I worried.  I still wasn’t sure how I felt about the whole triplet thing in the first place.  I was just terrified.  Plus, I knew it would never work.  Why?

Because I’m a terrible delegator, that’s why.  I can delegate to my husband when necessary, but even then I don’t like it one bit. I never know which tasks I can surrender and not worry about whether it’s done “my way” or not.  I hate having other people do my laundry, I can’t stand people in my kitchen (it’s a small kitchen), I couldn’t let people just feed my babies – because I was the one equipped for that, yet that was the thing most people wanted to do to “help” back in the day.

It’s one thing when someone says “how can I help” and I have to wrestle with my inner self to take that person up on it and give them something to do.  That’s hard enough.  But worse – the worst thing in the world for me is asking for help.   I hate asking for help.  It’s hard for me to admit when I can’t handle everything by myself, or I don’t know how to, or I can’t make something happen.  I suspect most people are like this to a point, so I doubt that it’s me being too far off the societal norm, but every now and then, asking for help becomes inevitable.

Much as I don’t wish to admit it, asking for help has become inevitable.  Poor Seth is doing too much, and as a result, I’m doing more than I should be – despite my bed resting status.  Keeping everything together is becoming an impossible task – and sometimes I feel that we’re holding on by a thread and anything I can do to relieve some of the stress around here is now absolutely necessary.

So I finally gave in and wrote to the woman who coordinates meals for people in our synagogue community when there is a need (birth, surgery, hospitalizations, bed rest, shiva, etc.) and asked if she could arrange meals for us a couple times per week, including Shabbos dinner.  Shabbos was the most important thing for me – because the kids can eat PB&J for dinner every night if they have to, but I’d still like the family to have a nice Shabbos dinner, even if I can’t spend all night Thursday cooking it.    I hate making this kind of request (mind you, the coordinator had offered multiple times and told me to just say the word, so it’s not that it was unexpected) – I feel that we’ve been on the “take” end of the “give and take” system that works so well in our community.  When I was pregnant with the triplets, my husband was sitting shiva, but I couldn’t help in any meaningful way, because I was on bed rest – so people came to help get set up (cover mirrors, etc.), others came twice a day to provide (and serve) us meals (the person sitting shiva isn’t supposed to serve themselves – but I couldn’t do serving either, so it was challenging).  Toward the end of my pregnancy, knowing that I would probably still be in the hospital over Rosh Hashana (and hoping that I would’t deliver before then – I ended up delivering between RH and Yom Kippur), people brought literally baskets full of food to stuff our freezer with so that the family would have nice meals.  After the babies were born, people brought us for two weeks upon my return from the hospital, and then again, when the babies came home a month later, we had meals sent to us for three weeks.  This past October, when I was in the hospital, once again, the community rallied and made sure that my family had food to eat each night – and I never had to think twice about it.

And now, here I am, a few months before I’m even due, and already asking for help.  I know that there are some kindnesses one can never repay – you simply have to turn and do for someone else what was done for you, and that *is* how we try to live our lives.  I *do* bring meals to other people who need them, and I make sure to give back as much as I can – but I’m beginning to feel that I have less and less ability to give back, and therefore have less right to take from the community, particularly over the long-term.

I know no one minds it – certainly I don’t mind when I make meals for other people.  Still, it’s never easy for me to ask for help.

Maybe this is the lesson I’m supposed to learn from all of this.  Or maybe G-d’s just being snarky again.  😉

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So when we were living in Spain, my parents were fond of a tradtional toast. Every new drink was toasted as “!La Penultima!” (the second to last). I’m kind of feeling that way about the hospital. I came in on Wednesday for “a few hours of monitoring” and ended up being admitted “for 24 hours”. Then all hell broke loose and I landed myself on Mag Sulfate for a day and a half, and they said they’d probably try to let me go Friday. Friday they didn’t let me go b/c I was still contracting and there was the impending snow. Saturday they said “just one more day.” Sunday they said, “Just one more day.” Yesterday they said, “just one more day.” I feel like I’m on my perpetual penultimate day of this almost-week-long hospital stay. I’m frustrated, and I’m sure Seth is even more frustrated. I’m tired. I’m ceasing to feel confident in the medical care I’m receiving (I think the DOCTORS have been totally on top of things – but the nurses are… not always, and THEY are the ones providing most of the direct patient care.

This takes me back to that one summer I spent in North Carolina in summer camp. I was miserable there, not because camp wasn’t good and not because I wasn’t learning a lot. But the people. The other campers in particular… It was just too much to be cared for by strangers for that long. I just wanted to go home. And now? I just want to go home. I really hope today isn’t another penultimate day in this endless stay in my hospital room.

I wouldn’t care so much about being here for days and days on end with no real definitive timeframe for parole, except that the longer I’m here, the more things that are falling through the cracks. Or maybe they’ve always been falling through the cracks and I just didn’t notice in the first few days. Either way, the devil is in the details, and no one here seems to be a devil worshiper.

I’m tired of whining, but there’s also a piece of me that feels like some of these things ought to be documented. So that when I look back on these things I’ll know that I wasn’t just being a hormonal, over-reacting pregnant lady. Or maybe so that when I look back on things later I’ll *know* that it was actually just me being a hormonal over-reacting pregnant lady. Most of the nurses here are very nice, but some are more on top of things than others. Many of the nurses can relate to aspects of my pregnancy – several were also on terbutaline pumps, zofran pumps, bed rest, etc. Somehow, their ability to relate doesn’t translate to consistent care, but hey, at least they’re personable, right?

When I was admitted on Wednesday, I made it clear that my PICC line hadn’t been flushed with heparin yet that day and that it needed to be flushed with heparin at least once every 24 hours. Nurses kept telling me that it did NOT need to be flushed with heparin, particularly if continuous fluids are running through it. That’s a nice theory, but I know from experience that when that PICC line wasn’t flushed at least daily, sometimes more, the line wouldn’t run very well. Nevertheless, the answers I got were “we don’t do that” or “you’re wrong.” Needless to say, it turns out that I know what I’m talking about. No one could get a blood return from the PICC line, and it stopped running very well, and ultimately became completely occluded. When I spoke with the IV Therapy nurse who replaced my PICC line with a new one (a saline-only flush), she was appalled that they didn’t at least flush it with normal saline 1-2x per day. When she pulled out the old PICC line, she could see that a fibrin sleeve had formed over the end of it. This is a common issue that happens with most PICC lines eventually, but had it been flushed regularly, it might still be working.

Yesterday’s day-shift nurse was nice enough. She, too, had been on both Zofran and Terbutaline pumps during her recent pregnancy (she has a 4 month old). She had the same primary nurse from the home health care that I’ve got. She empathized with the whole “not eating” thing. But she was also really flaky. When she hung my new IV Fluid bag in the morning, I told her I typically get a banana bag in the morning (IV Fluids with multivitamins for infusion, thiamine, pyridoxine, and folic acid). She said she’d look into it, but I never heard about it again. My OB had wanted me to stay in the hospital at least through Monday so that I could get my 17-P injection, so I had Seth bring in the injection and I kept telling her it was there and saying I needed it and she kept saying “oh good!” But I never did get the 17-P injection.

I have an order for 25mg of Phenergan every six hours. It took a few days to convince the nurses that this is a scheduled, not PRN, medication, so at least she got that part right. But I didn’t have a working PICC line until yesterday afternoon, so the Phenergan was being run through a peripheral IV that they had put in on Saturday. Phenergan is extremely caustic to the veins, so it can’t be pushed directly into a regular IV (though it can be pushed through a PICC line); it is supposed to be diluted into saline and dripped into the IV slowly. My orders are for 25mg of Phenergan in 100ml of saline infused over 30 minutes (200ml/hr). The nurse ran the Phenergan through at 999ml/hour – FIVE times what it should have been. I was in tears from the searing pain up my arm. I kept trying to tell her (and others) how much the line hurt (I’d actually tried expressing this for days), but I kept getting told that IVs in the hand are ALWAYS painful and that Phenergan is ALWAYS painful going in. Call me a skeptic, but I’ve always heard that once it’s in place, IVs shouldn’t hurt to the point of tears. I told Seth about the infusion rate and he said that’s just plain not SAFE. Yeah. Plus, hello? It hurt! When the IV therapy nurse came in later they had just started running ampicillin through my peripheral IV and I was near tears from the pain again. The IV Therapy nurse stopped the infusion, moved it to the working part of my PICC line, and pulled the line out of my hand. I realized then that my hand was swollen to 4 or 5 times its normal size. The vein had sprung a leak and fluid (painful, caustic fluid) had been leaking into my hand. (the swelling has gone down since, for what it’s worth).

Yesterday evening I was sicker than I’d felt since getting admitted to the hospital. In fact, yesterday was the first day that I’d thrown up since being in the hospital (I rarely go a day without throwing up – but since being in the hospital I’ve made no attempt to eat food and I haven’t moved out of bed – moving always makes me sicker). It turned out that although my medication order is for 25mg q6h, the nurse gave me 12.5mg of Phenergan. Normally, I’d be really annoyed about this, but it turns out that the hospital policy is that no more than 12.5mg may be given at a time because it is so caustic. While I think the hospital policy is stupid (there’s no reason they couldn’t just dilute 25mg in 200ml and infuse over an hour – that would have the same effect in terms of dilution to avoid the dangers of the drug in small veins), I am fine with the policy being enforced. I am *not* fine with it being enforced willy-nilly. How is it possible that in six days only one nurse picked up on the fact that the order wasn’t written per policy? My doctor this morning was willing to rewrite the order to 12.5mg/q3hours if I need to stay, so that is also a reasonable workaround that is compatible with the hospital policy.

Just as frustratingly as the Great Phenergan Snafus of 2010, was yesterday’s MVI snafu. I’m supposed to receive continuous IV Fluids at a rate of 125ml/hour (which boils down to about 3 liters per day). In one of those liters of fluid, they are supposed to add adult multivitamin for infusion (MVI), Folic Acid, Thiamine, and Pyridoxine (also known as a banana bag). I’ve been getting the MVI bag in the mornings, but as far as I’m concerned, I don’t care WHEN I get it, as long as I get it. Since I’m eating nothing, this is the only way I’m getting any vitamins in me at all. Yesterday when the nurse hung my first bag of the morning, I noted that it was just plain D5LR – with no MVI (it’s easy to tell – the bags with vitamins added are flourescent yellow). I let the nurse know that I typically get MVI in the morning and she said “Oh, okay, well, I’ll go check your chart,” but I never heard about it from her again. Normally the shifts here are 7-7 and 7-7, but for whatever reason, I had a different nurse (Nurse Ratchet – stay tuned for an entire post about her alone!) from about 4-7 yesterday bridging the gap and when she came in to hang a bag of fluid, I noted again that it did not have the MVI and I told her I hadn’t gotten MVI yet. “You get that at night.” No, no I do not. “well, I’ll check your chart, but I was told in report that you get that at night.” I don’t give a crap WHAT she was told in report, I’M the one who’s been here for nearly a week and I’m the one who’s seen how often and when I receive various medications. I’m pretty sure I know the routine by now. When the night shift nurse came on and hung a new bag, I noted again that I still needed an MVI bag. “I’ll check your chart.” Only this nurse DID check my chart – and she came back and said, “You’re supposed to get the MVI in the morning.” Yes. That’s what I’ve been saying all day. Well, the bag they had was expired (you can’t premix these bags too far in advance), so she said she was working on getting a new bag from the pharmacy. I finally got my MVI bag this morning – meaning I went a full day (with three different nurses) without any MVI. If I were eating ANYTHING while I’m here, then it wouldn’t be that big of a deal because obviously food has vitamins and minerals and you know, other good stuff. But obviously, that’s not the case.

Nurse Ratchet was in a league of her own, and deserves her own post. But the long and the short of it is that I got a visit from the charge nurse today after I nearly lost it on my nurse this morning.

The good news is this: My OB came in this morning and said she was inclined to keep me here in the hospital for another couple of days to get me through this next snow storm. I told her that if there was a clear medical advantage to me staying here, I would do whatever she recommended, but if she was still on the fence about it, I’d just as soon go home and see my kids. She conceded that I could go home, and noted that if I need to return to the hospital in the middle of the snowstorm, I should simply go to HC (which is five minutes from my house vs. this hospital which is 30 minutes without traffic or snow). My OB doesn’t have privileges at HC, but better that I get to a hospital safely and receive appropriate care from a hospitalist or resident on call than risk coming out here and getting into an accident. So I get to go home today and no more torture by nursing staff.

I’ll write more about it later, but I *did* speak to the charge nurse today and she had a very appropriate and acceptable response.

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Every nurse who has come on-shift since I was admitted on Wednesday has been shocked that I’m not eating. I mean, I get that it’s not normal, but there’s bound to be a notation in my chart somewhere that says “hyperemesis gravidarum” right? They give each other report at the start/end of each shift. And yet? Every nurse that’s come on shift has said, “You ate [dinner/breakfast/whatever], right?” Um, no. I haven’t had a tray in my room since I came in here (a couple of nurses have offered trays – so it’s not that I’m being neglected, it’s that I have no desire to have a tray of food in my room that I know I’ll never touch).

It’s not limited to the nurses, though. The OB on call came in today to assess me and let me know “the plan” – which is to keep me here at least until I get my 17-P injection tomorrow and a new PICC line (one of the lumens on my existing PICC line is completely obstructed and the medication they usually use to dissolve issues like that isn’t used in pregnant women). But she paused and asked where the terb pump was running – it’s subcutaneous. “Oh, well, you don’t need the PICC line then.” Um. Yes, yes I do. The Zofran pump runs through the PICC line and I can’t run that one subcutaneously even if I wanted to – because doses as high as I’m getting would tear up my skin if done sub-q. Oh, and there’s that hydration thing. “Well, you can’t take the Zofran ODTs? You need the pump at home, too?” Yes, I need the pump at home, too. I can’t keep the ODTs down. (Also, they don’t work as well as when the drug is continually infused). “Why do you need the fluids?” Because I can’t drink anything of substance? “Really? How long has this been going on?” Um. September. I get that she wasn’t my doctor back in September when this started, nor in October when I was hospitalized for dehydration due to hyperemesis gravidarum, nor when my first OR second PICC line were placed. But I still find it hard to believe that there’s NOTHING in my chart ANYWHERE that mentions that I’m hyperemetic. The doctor conceded that I do need to keep my PICC, so it’ll be replaced tomorrow.

Seriously – the nursing staff keeps very close tabs on my “I’s and O’s” (Ins and Outs). They know what I’m taking in. They know I’m not drinking. They *should* know I’m not eating (no food trays have come into or left my room since I’ve been here). And yet, they seem shocked when they hear that I haven’t eaten since before I was admitted. How do I make it more clear? I really hope I get to go home tomorrow. I’m growing weary of the hospital (a.k.a. the worst hotel EVER).

In other annoyances:

• My skin is so dry that it’s becoming abraded. My knuckles are cracking. My legs are itchy. My lips are chapped and split. Apparently the air is very dry in hospitals – and more importantly, I’m not getting a lot of fluids, so my skin just can’t stay hydrated. This is annoying, but hopefully I won’t be here much longer. If I had to move in for the duration, though, I’d have to get a humidifier or something.
• TMI Alert: One of the best things about getting OFF the magnesium sulfate is that they removed my catheter and let me resume “bedrest with bathroom privileges”. Except, it’s really a pain in the neck to get up to go to the restroom. I have to unplug the toco monitor (contraction monitor) and wrap the cord around my shoulders so it doesn’t drag. I have to untangle my Zofran and Terbutaline pumps. I have to undo the sequential compression stocking things. I have to unplug the IV Pump. And then I have to carry everything to the bathroom. Then I come back and I have to plug in the IV Pump, untangle the Zofran and Terb Pumps, and plug the toco monitor back in. And get myself back into bed, which is a much more difficult task than it sounds. I am ready to be home where it is less of a production just to get up and pee (mind you, even at home it’s a production, but at least there are SLIGHTLY fewer things to unplug).
• I have the toco monitor on my belly 24/7 to monitor for contractions. It stays on with a softish belt that straps around me. It’s not tight, but it *is* against my skin 24/7 and now the skin on my belly is abraded from the constant contact. At least at home I’ll only have to have have the toco monitor on for an hour at a time (minimum of 2 times per day). That will definitely be an improvement.
• Several times per day, they do NSTs (nonstress tests) – this means that in addition to the toco, they put a fetal heart rate monitor on also. This evening during one such NST, the baby’s heart rate decelerated with every contraction I was having. This is… not good. Fortunately, I’d just recently gotten Procardia, so the contractions went down shortly thereafter. Hopefully, this will not reoccur because I’m… not actually sure what all the implications of it recurring would be. I’m pretty sure it’s far too early for me to want to find that one out the hard way.

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I’ve been reading far too many online pregnant communities recently. I don’t know why I read them – I can nearly never relate to the posts. I don’t *have* normal pregnancies and no one else seems to understand my own experiences because I’m just not NORMAL. Here are some things I don’t get:

• Posts that go like this: “My hips really hurt which is making it difficult for me to exercise. Can anyone give me any good at-home exercises that are safe for pregnancy?” I mean, admittedly, exercise isn’t the first thing that pops into my head when I’m thinking of my top 139 favorite things to do, so I probably wouldn’t relate to this one anyway, but I’ve never been ALLOWED to exercise while pregnant, there was never any question about what I could and couldn’t do – I just wasn’t allowed.
• “I can’t eat a darned thing because I keep throwing up. Well, you know, except for how I finished my DH’s leftovers, bought a gallon of ice cream that’s now mysteriously gone(!), and, oh, right, I accidentally ate my daughter’s birthday cake before I gave it to her. But really, chicken is OUT!” I mean, sure I can relate to throwing up. Except, I can’t. It’s not a contest or anything, and I don’t wish vomiting during pregnancy on ANYONE because it’s not any fun at all. But “gosh it’s so annoying that I have to eat a saltine before I get out of bed in order to feel human” posts just… don’t resonate with me.
• “I’m 1cm dilated! OMG am I in labor? I can’t be! I’m not due until next month! I have a baby shower next week, and a photo session lined up the week after that, and a pedicure appointment for the day before my due date. I just can’t go into labor now! I mean, also, I want the baby to stay in there and get fat and healthy, too, but think about my pretty toes!” I would have given anything to have this worry with my triplets. I did really well with the triplets and got them to 33 weeks (exactly average for triplets), but we always knew I wasn’t going to be a 36/37 weeker. I figured with this pregnancy at least I wouldn’t be laying in fear of going into labor at any second… except, here I am in the hospital for preterm labor and I’ve still got three months to go. I’ll gladly trade my (nonexistent) pedicure appointment for a couple more months.
• My baby is 2 months old and I was thinking how nice it would be to have Irish twins. I think I’m ovulating, do you think I should have sex tonight and not tell my husband that I’m ovulating? I’m sure he’d flip out.” Any such post like this is completely alien to me, and I’m shocked at how many such posts there are. I mean, seriously. People PLAN these things? People have sex to get pregnant? I don’t understand.  (there are also the “I went for my annual exam and found out I’m 14 months pregnant” posts – which, you know, I also don’t get, but I figure so few people understand those posts that I’m not alone).

I know I’m being snarky, and I *do* know this isn’t about who’s got it harder. I’m not trying to say the trials and tribulations of pregnancy are always all sunshine and roses even without all the dramarama that I get to have fun with. I don’t think that women should have to love every minute of pregnancy – and I think it’s terrible that society seems to assume that women must enjoy pregnancy or they’re not good mothers. So it’s not that I don’t think the complaints I’ve posted above are legitimate. It’s just that I really can’t relate. Really.

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I’m not being discharged from the hospital just yet. Too much snow predicted (20-30 inches in our area) for anyone to feel comfortable sending me home with this many contractions. It’s the smart decision, if not the ideal. I agree with the decision even if it’s not what I would prefer. I’m off the mag sulfate, on a terbutaline pump, plus indocin and procardia to augment the tocolytic effect of the terb. Can’t stay on the Indocin long, though – so I’ll be off it tomorrow afternoon. Still have the Zofran pump and IV Phenergan. Still not eating/drinking. Still banging out contractions every few minutes, since coming off the mag. Mag’s evil, but I can’t say it doesn’t work, that’s for sure.

On the plus side, I’ve now met most of the doctors in my OB practice who deliver at this hospital, so I won’t deliver my (hopefully full-term) baby with a doctor I don’t know, in all likelihood. It won’t be long before I eclipse the total number of inpatient hospital days during pregnancy with this, my “easy” singleton pregnancy vs. my not-so-easy triplet pregnancy.

Everyone here has been pretty good to me, and the doctors have been on top of everything. I’m pleased with the level of care I’ve been getting, and I know I’m in good hands. I’m just… bored and about to go into shabbos with nothing to really read or do and no way to get anything to read or do b/c of the snow. Not the end of the world, but it *would* be nice if something would give.

Wish I weren’t so boring, but I truly can’t think of anything else useful to say. That’s pretty much all that’s going on so far.

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