Friday, August 30, 2013

How to be a medical advocate (or “Does the squeaky wheel really get the grease?”)

As any of you who follow me know, my mom has spent most of this summer in the hospital recovering from several brain surgeries due to bleeds and aneurysms. It’s been a hell of a summer and one I’m sure no one in my family bargained for or wants to go through again. However, I have to say that most of us rallied together to be there for my mom, my dad and each other throughout her hospital stay and even now, as she makes the transition to a skilled care facility.

What we didn’t bargain for, however, was the incredibly disappointing, disheartening, sub par and borderline unethical basic care my mom received after her surgery as well as the ridiculous lack of communication between the staff and supervisors of OSF Saint Francis Medical Center and the Illinois Neurological Institute Rehabilitation Services and my family. 

Let me set the stage for you. My mom is 78, and upon admission to the hospital (the first and third time) was pretty well aware of what was going on. My 82-year old dad could not have been more supportive or doting and spent entirely TOO much time by her bedside, making sure she was comfortable, well-tended to and honestly just not really wanting to go home to an empty house. My sister is a nurse with more than 30 years of experience in a number of fields (now oncology.) I am my mother’s daughter – the writer who is sometimes a bit too outspoken and very bad at hiding my feelings. My brother is a lawyer out on the East Coast.

Now by the looks of it, we’re set up to be “that family.” Those squeaky wheels that try to make things happen just the way they want them. But honestly, we went into this with complete trust in the healthcare system and processes, and simply tried to make sure we had as much information as possible and ask all the right questions before important decisions were made. We were lauded for being a great “support system” for my mom, and even voted “most entertaining family in the ICU.” That was in the beginning.

At the end of this ride, I’m sure they couldn’t get us out the door fast enough. We were the troublemakers. The ones who asked too many questions and had too many demands. The ones who showed up at the nurses’ station right at shift change. The ones who made the phone calls, wrote the letters and called the meetings. Yep, we became “that family.” 

Unfortunately, we HAD to. Because this stellar institution where my mom received her care – OSF Saint Francis Medical Center and the Illinois Neurological Institute Rehabilitation floor - this hospital that preaches their mission as “to serve with the greatest care and love” – really dropped the ball on this one.  

Enough to make my dad angry. And he rarely gets angry. 

Enough to affect the physical health of my sister, who felt she needed to personally be there to advocate for my mom’s care. 

Enough to get my brother the lawyer involved because we felt we weren't being heard and needed to bring it to that level. 

Enough that I stopped caring about what everyone thought of us and began writing and documenting. And I’m only just getting started. 

It would take pages to list the mistakes, inadequacies, oversights and miscommunications that took place during my mom’s nearly six week stay at OSF – the most heinous occurring during her nearly three week stay on the INI Rehabilitation floor. But here’s a sampling of what continually did NOT happen:

Supervision of meals. This was an order and on the big white board in her room. We ended up posting a letter outlining all of her “orders” as well as posting large signs on her walls (some at the request of staff!) So we her family supervised.

Meals in chair versus bed. This was also an order and we ended up having to post this one, too. One night I found her in bed and unsupervised, asleep with her hand on her fork and her sheet pulled up as a bib. So we her family made sure we were there for all meals and that she was safely moved to the chair.

Safety belt on wheelchair. Now, we get that we needed an order to have one she couldn’t get out of – that’s called a RESTRAINT and apparently not a good thing. Hospital politics and protocol aside, putting a seat belt with a button that says “PRESS” on a confused woman and telling her “don’t get out of your chair” then LEAVING her isn’t really “best practice.” So we her family stayed with her to make sure she didn’t get out of her chair.

“Press the call button if you need the nurse.” What happened was some generic person would come on and ask what we wanted, then we’d wait for someone to come in. And wait. And wait. Sometimes a half an hour, sometimes forever. Even if we said it’s kind of urgent, like she had to go to the bathroom or she was trying to get up and we didn’t know what to do. Now, I understand the floor is busy, and I’m not dissing any particular type of hospital staff. But when something like this happens repeatedly on a floor that is supposed to be providing her rehabilitation and basic care, I take issue. (DISCLAIMER: The PTs, OTs and Speech Therapists at this facility were STELLAR - we had absolutely NO complaints about them and they provided my mom with EXCELLENT care and rehabilitation services.)

I’ll spare you the details of the night she spent in her clothes because no one bothered to change her into a gown, or the morning my sister found her unbathed with her catheter overflowing and obviously showing signs of an infection and had to INSIST that a culture be ordered. I’ll only mention that she was allowed on the nurse’s station computer (even after family repeatedly told staff she was confused) and managed to change my dad’s email password and lock him out of his bank account, only for us to be told, “It’s good for her to be on the computer – maybe she should have her own account!” And maybe the most unbelievable – after finding out that we planned to move her to a skilled care facility upon discharge from the hospital COMPLETELY HALTED ALL CARE – to the point where my sister had to shower her the morning of her discharge and she was given nothing to drink and no nursing or tech staff attended to her. 

I’ll note that the above things happened EVEN AFTER my brother came into town and called a meeting with a dozen or more OSF/INI players in what I like to call my mom’s “Care Debacle” to review every single issue we had with her treatment, progress and prognosis. (Again, I stress, the actual PTs, OTs and Speech Therapists she met with during the day were exemplary.)

I’ve gone through a multitude of emotions, as has my family. From making excuses for staff, to realizing it’s them, not us, to disbelief to anger. And I want to note that I am not personally dissing any medical profession such as physicians, residents, nurses, tech staff or the like. What I am completely rebuking are the processes that are in place. Either my mom was not READY to be on that floor (which at one point I asked, since no one seemed to be able to properly care for her) or they were LEGALLY PROHIBITED from doing some things (such as the restraint) or they just weren’t adequately staffed to meet her needs (which led to safety and quality of basic care issues.) But the lack of communication with these issues and the things that we knew were SUPPOSED to be done and CONTINUALLY WERE NOT – to the point where we had to make phone calls, write letters and post signs in her room – makes me think that some policies and procedures need to be addressed at least on that floor – and soon. 

I’m sure the OSF/INI Rehab staff was glad to see us go. But it made me wonder – what happens to the patients who DON’T have a family like ours who advocates for their care? What do families do who don’t have a nurse in the family to ask all the right questions, or a lawyer to make sure all the i’s are dotted and the t’s crossed when necessary?  What would have happened if my mom had fallen during one of the times she was supposed to have a safety belt on and didn’t? What could have been the repercussions of my sister giving my mom a shower because no one would come in and do it for her? And God help us what kind of lawsuit would OSF have been up against if mom would have aspirated and choked on a piece of food because she didn’t have the supervision that was ordered for her? 

I shudder to think. So that’s why we were there – missing work, neglecting family and other duties at home. Losing sleep worrying if she was alone and if so, what negligences were happening in our absence. 

In the end, this is my message to anyone reading this. No matter how wonderful the facility might claim to be, make sure you advocate for your loved one's care. Ask the questions. Don’t be afraid to disagree or discuss a treatment or decision you don’t feel is right – like an early discharge. Ask to speak to a supervisor if you feel you aren’t getting the answers you need or want or the care your loved one requires. And if the supervisor doesn’t work, just keep going up the chain. No one cares about your loved one more than you, and no one is going to advocate for them except you.  

Listen up, OSF and INI powers-that-be. Letters are coming your way soon. This should not have happened, and I hope to God my mom’s care was an isolated incident – though I suspect not. You may be on the cutting edge of technology and medical prowess, but your basic care methodologies and processes puts you at the bottom of my list as well as that of my family. Knock on wood my mom won’t have to be hospitalized again, but if she is I hope to God she’ll be able to go someplace else.

Tuesday, August 20, 2013

A new normal

The hospital people don’t see my real mom. They see a 78 year old woman who, by her thick chart full of medical terminology, is recovering from a brain aneurysm, two brain surgeries in the course of six weeks and all the complications thereof. They see a woman who can’t get out of bed by herself. Who needs help getting dressed, bathing and brushing her teeth. Who can’t walk without assistance. Who can’t drink liquids without supervision. Who isn’t quite sure where she is or what’s going on from minute to minute, hour to hour, day to day.
Yeah, this is my mom. Skydiving. I believe she was in her 60's.
They don’t see my real mom. I try to tell them while they care for her. When she grabs onto the bar that lifts her out of bed, I ask her if it feels like when she zip lined on one of her vacations. When she’s strapped in the harness to keep her from falling when she walks, I tell her it’s just when she rappelled in the mountains. When she eats the pureed food they order for her I say I bet she can’t wait to get home to her newly-remodeled kitchen and cook dad a big meal (or better yet, have him take her to the Fish House.) 

Sometimes the hospital people see glimpses of her. And so do I. Whether it’s intentional or not, mom’s a real cut-up these days. She’s always had a good sense of humor, but she’s really turned on her comedic side to the therapists and nurses, and they all love her. It’s drier now, like my dad’s – said with a straight face but a gleam in her eye, like we’re all not quite privy to her private joke. But it beats the anger, frustration and lashing out that some patients in her condition experience. 

And she can still shoot me “the look.” The look that says to me, “I’m still in here so watch yourself – I’m just not sure how to get out but when I do you’re gonna get it.” The look that used to fill me with fear, but now fills me with hope. Hope that she’ll get better. Hope that she’ll come back to us. Hope that she’ll come home.

True love.
To them, I’m sure, they see patients like my mom every day. But my family isn’t used to seeing my mom like this every day, and it’s hard.

It’s really, really, really hard.

It’s hardest for my dad – the love of her life for more than 55 years. If you ever want an example of unconditional love – for better or worse – take a lesson from him. That man is there every morning for her breakfast and for most of the day, on into the evening, with very few breaks. He helps feed her and brush her hair and makes sure her gown is tied in the back. He brings her the paper every morning, shows her what day it is on the calendar and attends her therapy sessions. He keeps a notebook in his pocket that details every single day since this all began. Every. Single. Day. He winces when they poke her for blood. He makes sure she gets cheesecake for dessert because she really likes the cheesecake. He holds her hand and kisses her hello and goodbye. Every. Single. Day. He misses her. He wants her home so badly. We all do.

My sister is in a tough position to say the least. As a nurse, she balances the medical of her profession with the emotional of a daughter. We rely on her to translate the medical lingo and dumb down what’s going on to our mortal level. We ask her questions she can’t answer but she sure as hell would love to. Her personality has always been one of a caregiver – she can’t help it – but she’s exhausted herself in the process. As she says, “Sometimes being in the medical profession sucks because you can know too much.” I will admit, sometimes I appreciate my lack of knowledge in that area – ignorance is sometimes bliss. But I am so thankful for her knowledge, her compassion and her willingness to be my mom’s medical spokesperson and advocate, all while missing her as much as I do.  

I still find myself reaching for the phone on my way to work. Usually, once or twice a week, I’d call mom from my car – she always knew it was me since I called at pretty much the same time. “It’s that girl,” she’d tell dad when I called. I started a new job in early July and my drive is a bit longer. Even though I stop off at the hospital to visit her on my way to work, I miss talking with her – catching up and passing the time. Selfishly, I miss leaning on her – calling her when things are bad with my kids, or I have a problem with work, or troubles with a relationship. She always listened and always had her two cents to put in, whether it was sympathy, an offer of assistance, or a “shut up and deal with it” wake-up call. She had become my friend as well as my mom, and I miss that.

The Zones of OSF. We're in 'em, all right.
Life has changed for my family as we know it. We use terms like “subarachnoid hemorrhage," “dysphagia,” “vascular spasms” and “central line” like it’s our normal lingo. I’m sure we’ve collectively walked the quarter mile or so trek from the OSF North Parking Lot to the elevators by the gift shop and back more than 1000 times – my dad many more than that. We’ve traded home-cooked meals for the hospital cafeteria and fast food. For the first time in my life, I did my mom’s laundry. Weird.

Most significantly, though, we talk. We talk and we talk and we talk. We’ve spent more time with my dad over the past few months than probably during our entire lives. We’ve gotten to know him better, and love him even more for the man he is. I know he hates needing us, but as his children, we love him needing us. We love having him in our lives. He says he’s thankful for us; he has no idea. Anything we do for him is a drop in the bucket compared to what he and mom have done for us. 

We don’t know what’s in store ahead, but we’re trying, after nearly two months, to adjust to a new normal and the prospect of  a long road full of some difficult choices. What do I want? I want mom to come home. I want her to be able to go for a walk in the park with my dad. I want her to be able sit on her screened in porch and read a library book with my dog Domino at her feet. I want her to cheer on the Bears for another season (even though I’m a Packers fan,) and cook a pot of chili for my dad on a cold winter’s Sunday. I want her at my son’s first JFL football game and my other son’s graduation next year. I want to dial her number and hear her say “It’s that girl” again.

I want my mom back.

Tuesday, August 13, 2013

Are you ready for some football?

Well, I thought I was. I've always encouraged my kids to try sports. Hell, I had my oldest in a "Mommy and Me" swimming class when he was six months old. In fact, during his sixteen years on this planet, he's participated in baseball, basketball, soccer, tennis, kuk sool won and speed skating.

My youngest is very athletic - one of the fastest kids I've ever known. In fact, he can still beat his brother four years his senior in a foot race. But he's never been much for the team sports, preferring to stay perfectly active on his own.Which has been fine with me.

Then came football.

He expressed mild interest just over a year ago, and at the time I jumped on it. Having never showed any desire to participate in a team sport, I was encouraged that since we had just moved to a new area it might help him make new friends. There was a camp starting in August, and I told him that would be a good way for him to try it out and decide if it was something he wanted to pursue. Alas, camp time came around and he got cold feet, and made himself content to be an armchair quarterback for our beloved Green Bay Packers for the season.

Over the course of the next year, he met some friends and they started playing some pickup games. "Hey, Mom, wanna go throw the football?" started to be a common question. Of course, I'll never say no if my kid wants to go outside and do something with me. And actually, it was good for me, as I learned and perfected my spiral at maybe a 60% accuracy rate. Not bad for this old chick. His arm got stronger, he got better at throwing, more agile at catching. I was impressed.

Before camp time even rolled around the next year he was committed - plus his best friend had been playing for several years. My mom expressed her extreme concern at his choice of sport, which compelled me to fire off of one of those "I'm Ms. Kennard and I'm a paranoid freakazoid" emails to a JFL coach. I suspect I wasn't the first helicopter parent to "just check in" with a laundry list of safety questions, because he answered me in convincing detail and assured without sugarcoating the reality that everyone involved in the organization was all about training, coaching, encouraging and keeping the kids safe. Well, that's all they can do, right?

So I signed him up. For camp. Not for the season. I wasn't sure if this coddled kid could cut it for three days of butt kicking so I left him a way out. You survive the camp and we'll sign you up.

I so underestimate my son. He worked his ass off and loved it. He was challenged. He was driven. He was pushed. And he achieved. So I signed him up for the real deal.

J effing L.


So, I'm trying to be all chill, right? I stand there with my hands on my hips and observe their practices like I'm a talent scout or something. It takes every ounce of discipline to not go running out on the field every time another kid merely bumps him and yell, "DON'T HURT MY BAYBEEEE!!!" And yes, I've resisted multiple urges to encase him in bubble wrap.

Midway through one of the first practices, he ran over to the fence and motioned me over. I shook my head. I saw how these coaches worked - they didn't want some mama's boy or some pansy parent messing with their groove. "I'm dizzy!" my son whispered to me. "Tell your coach!" I hissed, using every ounce of resistance I had not to yell, "COACH! Bring me a cold compress and a stretcher - STAT!"  The coach spied him over by me and screamed, "KENNARD!" which made us both jump, and he took off running. I eagle-eyed him for the rest of the practice, waiting to rush out and catch him if he even looked close to fainting.

Did I mention they haven't even started practicing with pads?

Yeah, we did that last night. Son was instructed to go home and make sure all the pads fit in their proper places in his game pants. I opened the bag full of pads and my eyes glazed over. "This looks like a shoulder pad," I said. "MOM. These go on my LEGS." "Oh," I said convincingly. "Right." I fiddled with those damn pants and pads for about 20 minutes, then sent him over to my next door neighbor's (because he's a guy and guys know that shit.) He affirmed that they were properly placed, and I felt like a dog who had just learned a new trick. I KNOW WHERE THE PADS GO; THEREFORE I AM NOW BADASS.

Riiiiiight. I watch him hit with that helmet and I cringe. I hear the coach tell him to fall on the ball and I wince. I see him run until he can barely breathe and I die inside. And he has yet to actually tackle or be tackled.

I'm screwed. I want to be that cool mom who yells really encouraging stuff to her kid instead of watching the game through a shutter of fingers held up to my face. I've already looked up on Wikipedia the position he's playing, as well as found every defensive end on every NFL team so we can follow them during the season. I make sure the screws in his helmet are tightened after each practice. We've gone through three different mouth guards trying to find one that's "comfortable." Two different chin straps. Compression shorts. Oh, yeah, and that cup thingy. You want to see something funny - watch me trying to figure out a jock strap. Absolutely comical.

Tomorrow is weigh in. Yes, my skinny-ass son has to lose a pound to "make weight" in order to play in the league he needs to play in. I'm cool with it - I understand the rules. But I swear to God I feel like the eating disorder advocate by withholding junk food from my child for the past few days. Coach wants him there early tomorrow to run him. Just to be sure. I'm letting him order an entire pizza tomorrow night. Just to be sure.

So far I am impressed with this program and how it's run. I appreciate the fact that my son is getting some discipline. That he's learning to push himself and find out what he's made of at the hands of some very attentive, encouraging and driven coaches. And I look at my son with a new sense of admiration. I'm already proud of him. For trying. For excelling. For not giving up.

For that, I'll keep my mouth shut. For that, I'll let him do his thing and those who know what they're doing do theirs. For that, I'll be that sideline mom that encourages instead of hovers - and prays a lot for his safety and my sanity.

And I will always be the one to say yes to "Hey Mom! Wanna go throw the football?"

Go get 'em, Kid.

Tuesday, August 6, 2013

The Cross

My dad is, among many wonderful things, a woodworker. He’s created some pretty amazing pieces in his time. Specifically for my boys and me, a large wooden toy box that can later convert to a coffee table, a replica of an ice chest with custom brass latches, an oak mantle clock, and a Noah’s Ark, complete with intricately-carved animals. “Two of each,” he explained, “except the rabbits – because they multiply.”

And that’s just stuff for me. The entire list is endless – duck decoys, banks made from old post office boxes that he gives to grandkids for 8th grade graduation – complete with an embedded penny from their birth year, a china hutch for my sister, a grandfather clock for my brother, a scaled replica of a house for Habitat for Humanity (that was about 300 labor hours.) And I’m sure I’m forgetting many, many others. 

Each project has its own story, its own amazing features, and its own labor of love by a man known for his perfection, patience, skill and talent. But perhaps the most touching – the most powerful wooden treasure he’s created – is a small, wooden cross. 

We’re not quite sure of the inspiration. We think it was Mom, who is of course the source of many of his brainstorms (aka “I want you to make this for me.”) Story has it she either saw a small cross or wanted a small cross that would fit in her hand. So he got to work, finding just the right wood for just the right-sized cross, sanding it down and staining it with a rustic hue – just for her.

At some point, one of their friends became ill, and Mom thought she might benefit from having the comfort of one of Dad’s crosses. In turn, she found a poem to go along with the token, and typed it up on a small card to accompany it. 

The Weaver

My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.

Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skillful hand, 
As the threads of gold and silver
in the pattern He has planned.

He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.

Over time, the small wooden cross and poem became a symbol of comfort for select friends in need, and Dad carved an assortment of woods and styles. At one point, I requested a cross for myself during a difficult time in my life. Mom brought out the box and said, “You have to pick the one that feels the most comfortable in your hand.” I chose a dark wood with a beautiful grain – “the expensive wood,” my dad said. I carry it in my purse, and have been known to sleep with it in my hand, only to find it buried somewhere in the sheets the next morning.  

In the past few years, I’ve requested maybe three or four crosses for friends. I gave my friend Norma a cross during one of her first rounds of chemotherapy, and while at her house following her visitation noticed it sitting in a dish on her countertop. 

Before Mom got sick, Dad would turn down the bed at night and place the cross on her pillow. Every night. She has held tight to it going into every surgery she’s had over the past two years, and has had it in hand in recovery. I sometimes wonder if the surgeons realize its importance and allow it to remain in her possession in the operating room.

When she was getting ready to go in for her first surgery in March of 2011, I made a comment about her cross. “You know,” she said with tears in her eyes, “I don’t ask God to take away my burden. I just ask Him to help me carry my cross.” 

“Help me carry my cross.” That phrase resounded with me and still does. What an astounding request to God – not to take away the bad, but to help her deal with it. Just like that. And I remember that during the hard times. As much as I want to tell Him to “take it all away,” I simply ask Him to help me carry my cross. 

A rare moment with the cross in her right hand.
Mom held fast to that cross after her last brain surgery. Always in her left hand. One day I held it in my own hands and noticed how smooth and worn in places it was, right where her fingers curved around its corners. I placed it in her right hand and even in her post surgery-induced fog, she transferred it slowly to her left hand. 

A couple of weeks ago, while still in the ICU, we couldn’t locate her cross.  A few times she had dropped it in her sleep and it had fallen in the crevices of the hospital bed, but this time it wasn’t there. They had changed the bed sheets, and we could only surmise that it had gone out with the laundry. My dad called someone within the hospital to find out where the linens were taken, only to be told they were sent to an outside service. He tracked down the company and left messages, but no one ever called back. I’m sure they find many an items in their piles of laundry, and I was hoping they had some kind of depository for them. But I have a feeling that a small, worn wooden cross would perhaps not be viewed as having any value and promptly discarded. 

Upon realizing she had lost the cross, I offered her mine which I carried in my purse. It was a bit thicker and darker than hers, and not as worn. She looked at it and said slowly, “I want the cross Dad made.” Of courses, he HAD made my cross, but it was not HER cross.

At home, Dad and I combed through the box of crosses trying to find one similar in size, shape and wood grain. When we settled on one we both agreed was “close”, he took it in to her and placed it in her hand. She looked at it and held it for a bit before setting it on the tray next to her bed. 

For the most part, that’s where it remains. Occasionally if we tuck it in her hand she’ll hold it for awhile, but it’s as if she senses it’s not “her cross”, the one she’s clasped for comfort, prayed with and worn down to fit the curvature of her hand. She knows that cross has carried her through more tough times than most people can imagine, and the new one just doesn’t have that history. 

I know my mom doesn’t need a cross to validate her faith, but it seemed such a comfort for her. I know it is for me. Maybe she’ll take to the new cross, maybe she won’t. Someday I’m sure, I’ll wear mine down like she did hers, but I have a long time to go before I’ve carried near as many crosses as Mom has. I’d give anything to find her old one, if for nothing else but to bring her – and my dad - some comfort and peace.