Yen

My mom, a retired RN, has been bedridden since Tuesday before Christmas with severe back pain. My brother (also an RN with 10 years in the ER, visiting from AZ for Christmas) and his wife drove her to the hospital last Thursday, and she's been there ever since. She has Spinal Stenosis, and the MRI shows a lumbar disk bulge that has grown from 2mm to 5mm since last summer ('09).

She was given Morphine on admission (didn't work), then Dilaudid (barely works) + anti-inflammatory. So, if the powerful narcotics and IV inflammatory didn't work, then why did the doctor order plain Tylenol to be given every 6 hours??!!!!! WHY???!?! When my brother asked the nurse "why is she getting Tylenol", the nurse answered "It's an anti-inflammatory". NO, it's NOT!!!!!!!!!!!!!!!!!!

Monday morning she got her first epidural injection, and we are still hopeful that will begin to work soon. She is willing to consider surgery, so we are already looking for doctor referrals.

My mom is 80 but still lives in her own (2-story) home, totally independent, and other wise very strong and healthy. She takes walks, goes to Curves (for 8 years), and takes line-dancing lessons. Spinal Stenosis and Osteoporosis are her only health issues, but one little fall can lead to.... well let's not go there.

My brother went home today, she may be transferred to a rehab facility today and can't go home until she can walk and her colon comes back to life, and it's looking more likely that my shoulder will need some type of surgery. I hope I don't snap at the doctor or nurses.

Thanks, I just had to vent. Back to your regular programming.

AzTallRider

My wife is a Physical Therapist at a rehab facility, getting elderly folk back on their feet after surgeries and such. After hearing her talk about work, my recommendation is to have the family -very- involved in the process. Meet with the facility staff, including nursing, rehab therapists, and whatever case-worker may be assigned by the facility or by the insurance carrier. Insist on receiving their candid assessments and recommendations, and get it straight from them, unfiltered. Question anything that doesn't make sense (like the Tylenol) and be a royal PITA (nicely and professionally) if that is what it takes. In most facilities, a loud voice -does- get attention, and you generally do want attention. If you can be insistent, but be nice about it, you will get the best care the facility can give, which is the best you can hope for. Patients who are nice, and who have knowledgable involved families (who are also nice), are the ones that get the best care, and there are times when there isn't enough care to go around, or there is staff that just doesn't care enough.

Yen

Thank you so much... that's very helpful. Turns out she will not be xferred today after all, due to a nosocomial infection (my brother fears MRSA) at the first IV site which took THREE days for any response and doc did not order a culture!!! We're on our way there now.

The Weak Link

Is it OK if I rant against MDs too? I don't want to hijack the thread, and I share your frustration, even though mine is more benign and ultimately humorous (except for the bills involved). I'm just asking because I went on such a first-class anti-MD rant this AM that I got a standing ovation from the nurses. I mean, who's going to argue with someone with a scope in their hands?

AzTallRider

Rants against your own profession are always the best.

The Weak Link

Yes, but I need permission from the OP.

AzTallRider

She'll never know - she is off to rant at the hospital.

Yen

Rant all you want! I can post updates and read your comments on my phone.

JanMM

It's very much in the best interest of your mother and the hospital for her and you to be as involved as possible in her care. Her providers can do a better job with input and feedback from the patient/family.

pmcq

Jen-
I would be happy to join you to rant (and chant?), support, get coffee or whatever. Just let me know where and when.
~p

The Weak Link

OK, then.

This note took about two hours to compose as I've had a busy and as of now not yet completed day.

I have, in spite of all odds, 4 beautiful healthy grandchildren.

My first, the first daughter of my first daughter, had an uneventful course. That was nice.

My second, the first daughter of my second daughter, is perfect. My second daughter is petite and very pretty (obviously not taking after me, in fact she gets accused of being the adopted one of the family) and hence had a very pretty petite baby.

About a week prior to delivery some Dr. Kiljoy told her that "Your baby is very small for dates, and although it's probably not a Down's child, it might be". Sooooo, what are we supposed to do about that? Call the whole thing off? She'll deliver whatever she's carrying. All that comment did was inject a TON of anxiety about the delivery. Of course the baby was fine.

Now, the second daughter of my first daughter is also fine, BUT my daughter had a mid-term ultrasound where they spotted an "intercardiac calcified body". Same deal. "Those are often seen with Downs children, but you also see them with 'normal' children, so just be aware of it". OK, thanks. I might mention that the whole family is pro-life and she'd carry the baby to term even if it were a Downs child.

It didn't help us to relax when some close friends had a Downs child at the same time as this result. He's adorable but has a serious heart defect and will have to go to surgery when he's a year old. No parent/grandparent likes to face that prospect.

So, having succeeded in cranking the anxiety level of the family up, they perform multiple ultrasounds to keep an eye on things. My first daughter's second daughter was born uneventfully and was perfectly normal.

The obligatory pediatric cardiology consult was fired off. The doc walks in, sees my son-in-law holding a perfectly normal baby, as says, "Let me guess. Intracardiac calcification? We see those all the time. They don't mean anything." Sure enough.

The echocardiogram was normal, of course.

Soooo, along comes the second child of my second daughter. In the last three weeks of pregnancy, he descends into the pelvis, anxious to make his entrance into the world. He comes out with a squished head.

Well, these things happen and he's cute anyway, so we're not alarmed, but along comes someone who says, once again, "He's probably OK but there is a slight chance he has craniosynosthosis". My daughter naturally gets on the Interwebs and pulls up all the pictures of what some of the children with that condition look like as they age, and freaks out.

A week later the baby gets the skull films, which are normal. Oops. Sorry to jack up your anxiety for no good reason. Never mind.

So three out of four of my perfectly normal grandchildren have been born with potentially serious conditions being bantered about as if we were talking about whether we might have sprained a knee or something.

The guilty parties should be shot, or at least someone should dump saltwater down the gas tanks of their Mercedes, which will be financed by the twenty-seven ultrasounds that were performed.

I say we socialize the lot of them.

::sits down to standing ovation::

AzTallRider

Managing our mis-managed health care system: one of the most difficult tasks any of us face, and I hear it's even scarier for doctors.

pmcq

An addition to your comment which may explain many of the worthless comments and options offered in the middle of medical events. When my mother was in the last hour of dying from heart failure, the doctors came into the waiting room to let me know that her kidneys were failing and asking if I would like to consider surgery for a possible repair. When I asked incredulously if they actually understood that she was dying, the senior MD nodded yes, and added, "But we wanted to make sure you had an opportunity to choose this additional surgery if you thought it was the right thing to do."

My brother (a lawyer) and I, both with numerous college degrees and capable of asking lots of questions, were at least prepared intellectually to deal with the absurdity of this "option." But I have often thought of those who don't know what to ask and simply trust authority to guide them in situations like this. What needless heartache for them and a waste of the final hours they could spend with their loved ones.

AzTallRider

The various parts of the system (including Insurance Carriers, Regulators, Lawyers, Healthcare Providers, and Patients) have conflicting priorities, which meet head on at the worst possible times. If we could somehow get the whole system focused on making and keeping us *healthy*, rather than being entirely *procedure* oriented, we'd all be better off. Few people believe the system is working, but I refuse to go any further than that, for fear of opening up a political can-of-worms based on our differing perceptions of what is wrong and how it should be fixed.

Jen - let us know if there is anything we can do to help!

DnvrFox

TWL and others - I could write a book - or three, given 43 years of intense interaction with the medical, rehab and human services world. But, I won't bore you, except to say that it is entirely FUBAR and that there are many aspects of the system - particularly the Social Security and SSI system, that are totally counter productive to goals to which every one of us would subscribe - that of being independent, able to work productively and be a contributing citizen.

And, Jen - stay involved, be pleasant but firm. My wife is an RN and was a Certified Case Manager, and helped folks work the system (very effectively). Sometimes it is very helpful to have a 3rd party on your side - it adds a lot of credibility so it isn't just the "dumb, biased family" raising critical issues and seeking appropriate solutions. Even a minister can play that role.

And your comment about Tylenol reminds me of a discussion a couple of years ago with a Medical Asistant who was arguing with me about taking Advil and not Ibuprofen. They are the same thing, dummie, but this idiot MA could not fathom that fact.

BengeBoy 

Not going to add any personal ancedotes just wanted to say I appreciate rants on this topic.

Your loved ones are all lucky to have you as advocates for their care.

One story I do want to share: a year ago, my mother was critically ill, not expected to live (she's doing great, now, btw). We had a number of consultations with the whole family -- my brother, sister and I live in different states and on several occasions I organized conference calls so all 3 of us could talk to the docs, nurses, care coordinators together.

At one point one of the care coordinators said they were pleasantly surprised to have the family so involved in care decisions, and I said I was shocked. I asked, "Isn't this what every family does?" She said, "You'd be surprised how frequently the family just disappears...."

WTF?

Yen

Thank you all so much. She will be transferred after all... just waiting for that to happen. I'll read your new comments later at home on the computer there. Jen

Kurt Erlenbach

Here is a link to what I think is one of the very best articles about health care I have ever read:

https://www.newyorker.com/reporting/2...a_fact_gawande

While not directly on point with Jen's problem, it goes into New Yorker-esque detail about what doctors and patients do when confronting end-of-life decisions. Because too few families and patients really think about and confront what to do when the time comes, way too much money is spent and suffering is caused by futile "care" that really is anything but. All of us in our particular demographic have or will be confronting these issues soon. We all need to think carefully about them.

overthehillmedi

Lady Yen, there were times during my career that I would advise people to let the inner beatch(I was going to use another word but the nanny would only show stars) appear when the medical staff was not making the sense they wanted. Hope Mom is home doing her thing a.s.a.p.

Yen

Writing this on my phone on the way home (not driving). Mom's in the rehab facility and I can see she would just like to cry. Honestly, so would I. Tomorrow will be a better day.

The Weak Link

It's helpful for those who still remember why we entered these professions to hear these stories.

We have a very rapidly aging aunt who needs to purchase a Medicare drug plan. My wife couldn't figure it out and dumped it in my lap. I'd like to think I'm as sophisticated a consumer as there is, but weaving through all the stuff set off a mother of a migraine. Finally I got on a government site that laid out the options fairly clearly, so I committed my poor aunt to a plan that I sure hopes helps.

If she dies tomorrow we get a pretty good break on the hated death tax. Just sayin'. Wish it weren't true.

Yen

Friends: I so appreciate your stories (Bravo, TWL!) and thoughtful insight and suggestions. I am too tired to comprehend and write much right now... needing a good night's sleep, or maybe just a good cry. At least the skies have cleared and seemingly endless rain is gone for now; tomorrow I hope to bundle her up and take her outside to sit in the sun for a bit. I'll probably spend the night at her house so I can be with her early on Jan. 1 to watch the Rose Parade together. She will love that.

Yen

And Pam: Thank you. I would love to get together with you, take a ride, have coffee. Let's do that when things settle down.

Road Fan

When my dad was ill I discovered that hospitals are a system that needs to be worked, like a big company or perhaps a branch of the military. Things are done based on procedures, and as a patient or patient representative it helps a lot to have the correct expectations. Strange decisions are usually taken for reasons. There might have been alternatives, and the patient's or family's opinion does matter, in terms of what choices to make. But by having some of these discussions with the primary care physician, the MD in charge, or the case manager, it's possible at least to understand why they did what they did, and why they plan what they plan. You'll also see the limitations of various facilities, and of medical science in general.

A geriatric fellow who worked for his PCP was especially beneficial because she understood that translation was needed from the jargon of the various specialists into something a lowly engineer could understand. On that basis I could put my concerns into very efficient terms and start to make progress speaking to the specialists directly. I couldn't cure his MRSA but I could become confident that what is being done is what should be done.

It was exactly like working in a big company, which I've done a lot of.

I truly hope her infection was not MRSA, and presumably it wasn't. My dad's MRSA was blood-borne and did not "stay dead" after being treated. He'd get released to rehabilitation, then returned to the hospital when he had a flare-up, back and forth.

Yen

Thank you, Road Fan. I hope it's not MRSA, but my brother fears it is after working in the ER. He is aghast that it wasn't IMMEDIATELY cultured. It began as a marble-sized lump at the site of the initial IV, and 3 days later is a lump the diameter of a lime.

It's Friday, New Year's Eve, and I am due back at work on Monday (after 2 weeks vacation). I would like to see if I can get her transferred to a rehab facility close to my home (a 10-minute drive by car), instead of the rehab unit within a convalescent hospital to which she was transferred last night. After seeing all the feeble little people in wheelchairs last night, all I want to do is get her out. She's not like them. I'll check things out today and see what it's like during the day. It might be the incentive she needs to get well and get out!