Pediatric Dream To Pediatric Nightmare

I went to nursing school for one reason. I wanted to be a pediatric nurse for the rest of my life.  I loved my pediatrics rotation in nursing school, and the time I spent volunteering on the pediatric floor on Sundays (also during nursing school).  I babysat a lot as a teenager, and worked in the church nursery for 11 years. Then the real world and real life happened.

I moved away from the Midwest to Texas in late 1985.  The hospitals there didn’t have pediatric floors at that time where I lived, so whatever the kid had wrong with them, they went to the floor that dealt with that problem.  I worked in neurology/neurosurgery, so I got the kids who were neurologically impaired/sick.  A four year old near-drowning was my first ‘real’ sick kid.  She’d never recover.  At four years old her life was over.

The next 16 years, I worked with various types of patients, including adolescent psych and general medical surgical patients in a community hospital.  In adolescent psych, it was rarely the kid who was the train wreck, considering what they came from.  I timed contractions on a 12 year old who was carrying her dad’s baby.  She was terrified (understandably) and would never be able to erase that part of her life.  I also worked with a kid whose step-dad bit his finger off because he got upset with the kid.  The kid was remarkably pleasant, and didn’t have a resentful or  defiant personality.  Wow. Survivor.

When I moved back to the Midwest for family reasons, I was thrilled to be offered a full-time job on a pediatric floor.  Once I’d finished orientation, I’d be floating to the Pediatric Intensive Care Unit (PICU) for any critically ill child, and also Neonatal Intensive Care Unit (NICU) with the preemies.  I couldn’t wait to get started.  After 17 1/5 years of being a nurse, I was finally getting to do what I’d really wanted to do.  My previous experience was incredibly helpful, so it wasn’t a wasted 17  1/2 years. Not by a long shot.

I hadn’t anticipated the horrendous circumstances surrounding the majority of babies and children I encountered.  The congenital limb deformities, ambiguous genitalia (can’t tell for sure if they were girls or boys), organ failure (and the skin color literally that of Kermit the Frog in bright sunlight), the horrendous abuse cases on babies as young as a month old, and other terrible accidents and neglect.  We did have the ‘routine’ tonsils and appendix removals, but those weren’t the norm- most of them don’t get admitted for those surgeries anymore.   Most of the kids that came through there were going to be permanently disfigured or chronically ill.  Some ended up in the local children’s nursing home.  And those NICU babies that had permanent disorders from being premature had to go somewhere when they got sick. Again.

A ten week old baby shouldn’t have a broken leg (in a tiny cast) because mom’s boyfriend got mad and tossed it off of the couch after twisting its leg.  A six pound, one month old baby who had weighed more at birth, and gone through heart surgery, shouldn’t be left in a room, tended to mostly by the household pet who would react differently when the baby smelled too much, thus alerting the ‘parent’.  A fifteen year old shouldn’t be twisted in muscle contractions, in a vegetative state due to some fluke illness years earlier.  A first-grader shouldn’t have the skin tone of a kiwi fruit because of a failing liver. A toddler shouldn’t have part of its scalp torn off from a very random accident involving a hot tailpipe, and not being seen when the car was backing up. That kid actually was lucky in a bunch of ways… staying alive with no permanent brain damage was pretty significant.  If it was on the news, I met the baby/kid in the story.

Babies shouldn’t be born three months early.  They shouldn’t be considered ‘big’ at four pounds (but considering the babies that weighed 1/4 of that, they were huge in that NICU environment). They shouldn’t be born with only parts of their heads formed, and not visited by their parents like the ‘normal’ preemies. They needed to be held and cuddled, too.  Even if they’re a mess.  They still can respond by calming down, and nestling into the arms of a stranger called a float nurse.  Don’t they deserve that?  Why did the charge nurse thank me for just treating that little partially-formed headed baby like a b a b y ?

A two year old shouldn’t have scalded genitals and buttocks because another boyfriend of the mom decided to dunk it in hot water, and hold it there. That two year old should have cried during dressing changes. The kid had no skin left on that part of its body.  The kid had already learned that crying was pointless.  That kid should have been laughing and smiling when interacting with adults- not looking for some sign of impending abuse. At least that kid was loved by the staff- and before leaving was guzzling juice and eating all the Cheerios he/she could eat.  The kid was very good at hollering and directing traffic in a high chair at the nurses’ station before being discharged to foster care.  That was a good thing. The kid got some ‘normal’ before leaving.  It’s sad that ‘normal’ didn’t happen until being in the hospital as a crime victim… at age two.

I hated when I got a call that social services was bringing a mom up for a supervised visit. This would be a mom that allowed her boyfriend to abuse her baby.  This would mean I’d have to be there to defend the baby. I hated when she showed up and was not much more than a kid herself, and had the ‘deer in the headlights’ look on her face.  She didn’t really know what was OK to do to a kid, or what her boyfriend was capable of doing. She’d probably been raked over the coals when she was a kid. That never excused anything, but it could explain some things. And for those moms, there was usually more hope in that she was teachable.  The interaction with the babies I saw was positive, when the moms bothered to show up at all. But mom was damaged as well.  It was lousy all around. I hated that my anger wasn’t justified by some monster showing up.  I just had more ‘kids’  to be angry about.

I ended up leaving for many reasons (one was my own declining health; another  huge one being the cut in hours in the summer when the kids weren’t in school giving each other all sorts of contagious diseases).  The abuse was a factor.  Injuring a child just didn’t mesh in my head.  I got very protective of those little kids.  Their crime was existing, and that’s not good enough to justify their reasons for being hospitalized. Nothing is good enough to explain hurting a kid.

Pediatrics was a good experience in that I got the experience, but overall it was a tragic mingling of chromosomes run amok, congenital mayhem, and sociopathic people in the kids’ lives.  I’m glad I worked there, and saw what is out there.  But my dream job ended up being a horrific showing of the worst of things that can happen, either biologically or by psychopathy, with an innocent baby or child on the receiving end.

I have a lot of respect for the vast majority of the nurses I worked with on that pediatric floor, the PICU, and the NICU.  It tore me up.  I know those other nurses cared as much as I did, but they handled it differently.  Most had their own families.  I was single and didn’t have kids, so there was no ‘balance’ of how kids should be, living at home.  I didn’t have distractions to make my life less one-sided.  It was all about those babies and kids.

Something for the nursing students and new nurses out there: You don’t see the full job when you are a student.  When you are new, everything feels crazy for up to several years (there is a LOT of information to put together to make you a fully functioning, competent nurse).  Don’t judge what you think you want to do based on what you think it really is.  Wait until you know your strengths before deciding what is the best place for you.  I spent 11 years working in a church nursery, and went to nursing school wanting to take care of precious babies.  I just hadn’t anticipated how they got to the hospital.  Keep an open mind about where you fit in the nursing profession.  It’s never how nursing school shows it.  I hated geriatrics in school, and loved my nursing home jobs as an RN.  I didn’t think much of drug and alcohol rehab or psych when I was in school, but truly enjoyed my five years combined of both.

You don’t know what you will like until you really know what it is you’ll have to do. 🙂

Ending Up On Disability….Part Two

When I got back to my hometown, I was thrilled when I got the job that I actually went to nursing school to do.  I was going to be a full-time pediatric nurse.  I had taken care of kids in various other settings, but never on a pediatric floor.  I’d also be floating to the Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) after orientation.  I couldn’t wait.  The autonomic episodes had been much less frequent in the months before I moved back to the Midwest, and I was very encouraged.  I started that pediatric job absolutely recharged.

I really enjoyed the experience on peds.  I wasn’t prepared for the abuse cases, or some of the really serious limb and congenital deformities, but I was eager to learn.  I wasn’t prepared for the temperature of the hallways on the floor.  The other nurses kept the temp at about 76-78 degrees.  In patient rooms, it was always expected that temperatures varied according to the patient’s comfort.  Hallways were generally kept cooler.  Not with that bunch.  I asked if I could keep the report room cooler so I could  tolerate it, and the vast majority of the nurses agreed.  The night shift was really a nice group of nurses, until….

…one  young, catty nurse (that needed 3-4 tries to pass boards) refused to allow me any space that was tolerable.  I’d already been having more episodes, even at work, and it was a major issue.  I’d been sent to the ER several times during my shifts, which was a burden on everyone I worked with, since they’d have to pick up my patients mid-shift.   I hated that, and was trying to stay well enough to work by having one corner of the floor where I could have the temperatures cooler.  Had I been as vindictive as that one nurse, I could have thrown the Americans With Disabilities Act in her face, and gotten some space that I could tolerate and keep functioning- that was a reasonable request.  There were issues with hours being cut in the summer because of low census, and that became a deal breaker.  I was also becoming terrified of dropping a baby if I began to feel shaky.  I would do all care by keeping the baby in the crib- I’d put my arms around them, but their body never left the mattress.  I never told anybody.   I needed to go.

I got a job at a nursing home, where most (if not all) of the direct care was done by the CNAs. The chances of me dropping anybody were next to nil.   I would help transfer people or reposition them, but I was never primarily responsible for the direct care.  The ambient temperature in the facility was warm, but better.  I went a few weeks without any episodes. And then it happened, towards the end of a shift. My blood pressure sky-rocketed, and then I started passing out.  They were already getting ready to put me in a desk job doing the patient assessments that were similar to the ones I’d done in Texas at a couple of facilities.

I started the desk job, and could keep my office cool enough with a fan to be doable. Then the seasons changed, and the heat was on in the building.  I started having trouble again, as well as considerable pain.  Both of my primary triggers were kicking in, and I started having a lot of the episodes.  Eventually, my boss had to start sending me to the hospital via EMS for liability issues (which I hated). There was also some weird rift between the office staff and the administrative nursing staff (that I was part of), and ‘hiding me’ became a problem.   In  the last six weeks I worked, I was sent to the ER via ambulance about 12 times or so.  I don’t remember any of the rides.  I do remember waking up in the ER often enough that it became common enough not to scare me.  One time I had pyelonephritis and sepsis, which triggered me passing out in my boss’s office- so that’s not technically the dysautonomia.  But the rest of the trips were because I was cyanotic, blotchy, and/or cold and pale- and at best, semi-conscious.  There were times my boss thought I was dead.   My coworkers would either see me starting to fade, hear me fall, or find me- out cold.  It wasn’t going to work.  I had become unemployable.

The seizures were also an issue, as they were more likely to happen when I was in the earliest stages of sleep (regardless of cause), as was discovered on a 5-day video EEG done later on.  It made some things make more sense.  Sleep seizures sound relatively harmless, and since mine are located in my temporal lobe, they aren’t as taxing on the brain- but, I wake up groggy and with headaches that are pretty intense. I’m shot for the day after those.  I also have chewed up inner cheeks and/or the side of my tongue with the seizures.  My coworkers did see seizures, and described them to me; I don’t remember much of what they said.  There was some left-sided shaking, but not the whole body jerking that people see on TV.

Finally, the day came when my boss said I needed to go on disability. April 2004.  She was very nice about it all, though I later became frustrated by corporate ‘legal requirements’ about me returning to work (I think they tried to make it impossible for me to return, and hoped I wouldn’t try). I met the requirements, and tried to return about seven months after leaving.  I didn’t last long- maybe 6-8 weeks.  I couldn’t do it.  I honestly tried during that 6-8 weeks, but I was constantly in agonizing muscle pain, and the temperatures weren’t good. I’d make it through my partial shifts (but go home and fall apart), but then I started full 8-hour shifts. The pain and heat triggers were too intense, and I was off for good.  I was devastated. The last day I was there was actually to pick up my paycheck, when I started having one of the episodes.  I refused to go to the ER even after EMS was called.  My blood pressure was very high (as it sometimes did with the dysautonomia, before dropping). Police drove me home since they wouldn’t let me stay in my own car (it was about 15 degrees below zero wind chill). January 2005- the last time I ever worked as a RN.

My life as I knew it was over.  I felt completely useless, and my coworkers acted like I never existed (as was the M.O. of how we had been instructed to treat former employees at that facility; it was weird). When I was initially off,  I had been told that some of the floor staff were asking about me, and to not talk to them on the phone if they called me at home- at my own home, on my own phone, on my own time.   I saw one former coworker in the grocery store one day, and as soon as she saw that I saw her, she took off, without even acknowledging I was there.  I know she saw me.  All I did was get too sick to work.  Yet I was treated as if I were some enemy of the facility.  It was a nice place, and I liked my job.  But that was weird. Or maybe just ‘Yankees’… I’d been used to people in Texas, where that wasn’t ‘normal’ by a long shot.  At one nursing home, one of the nurses had to take an extended leave because of cancer, and the entire facility collected food for her family for Christmas, and toys for her kids… that’s just how it was done there.

Later I was told I screwed things up on the assessments- I had been doing the same essential  job  I’d done where the corporate consultant called me herself to ask me not to resign.  It didn’t make sense.  All I could think of was the times I’d returned to work at 3:00 a.m. to complete assessments on time, and maybe being so exhausted I made mistakes.  But screwing things up wasn’t something I was known for.  That hurt even worse.   I could deal with the ice cold shoulders- but negative comments about the quality of my work that made no sense to me was really hard.  Integrity is really important to me.  Having that trashed was extremely difficult- and I was never shown proof.  I don’t know how much was actually true, and how much was manufactured, since being told not to talk to anybody. I was still in the early stages of getting on disability from insurance from this employer…I felt  intimidated.  It may have been what was told to the other staff to explain why I was gone… I’ll never know. And I wouldn’t trust anything they told me now anyway.  I wonder why the two other people I saw ‘removed’ actually left.

Not being employable was (and still is) extremely hard.  My identity as a nurse is essentially gone. I have had more physical problems since going on disability.  I had a knee replaced, tore the other ACL and meniscus but couldn’t get them fixed because of other medical problems, had  multiple pulmonary emboli (acute, subacute, and chronic in all lobes of my right lung), heart catheterization, 4 years of Coumadin,  leukemia, worsening diabetes with multiple insulin shots/day, major issues with medication interactions, horrendous things happened repeatedly at one ER , etc. My pain level has gotten worse, and the headaches now are bad enough that narcotics are ineffective after an hour or so- so I live with them.

I have to wear a vest with 4 ice inserts year round if I go out to the store, or to someone’s home for as little as 15 minutes.  I can’t walk without some sort of support except for the short distances in my apartment.  If I don’t have something in my monthly budget ahead of time, it isn’t possible.  There were no friends to have dinner with, and no place I can go without my ice vest (and I’m thankful I’ve got that, or I wouldn’t be able to spend any time at all with family at Christmas; I can’t eat hot food in a hot room even with the ice vest- but being able to visit with them after dinner is a blessing). I do have a childhood friend with whom I’ve reconnected, and we’re hoping to get together soon. With the ice vest.

What can YOU learn from this?

Always get short term  and longterm disability insurance whenever you can.  If you don’t have it, and end up needing it,  you can plan on having to move in with whatever relative you have, and being poor for the rest of your life, but not poor enough to qualify for any extra assistance from anyone, anywhere. Be very thankful if it just becomes wasted money- but if you need it, it’s the difference between about %40 more income. Think of it as rent being covered.  You may never get sick….but you never know when a drunk driver is out there.

-Don’t forget people who get sick and have to leave.  Their world has been completely altered forever.  Even a five minute phone call means a lot.  Just being remembered at all is huge.

-Keep documents of health related issues.  If nothing else, it saves time if you have to see a new doctor.  If you need information for any sort of disability, you’ll have it (even if  just dates and providers)  to fill out the Social Security, and LTD forms.  I had over 1000 pages of hospital and physician documentation, and was passed on the first application.  I’d have 3-4 times that amount now.

Don’t assume you will never become disabled.  I certainly never expected it when I started out as a nurse, and even when I was initially diagnosed with epilepsy, and later the dysautonomia. I thought I could fight through whatever happened…eventually a body gives out.  Nobody knows when, who, or why.  Be prepared as much as you can be.