Why Are Hospital Food Options So Bad?

Literally adding insult to injury, hospital administrators should be ashamed of themselves for price gouging parents and other loved ones helping their children recover.  Hospital cafeterias get away with this price gouging because they are the only game in town.  Their inherent monopolization allows bottom line administrators to make prices more like airports and sporting events.  Where is the compassion? 

I will never forget trying to grab a quick bite to eat before running back upstairs to be with my son who had received a bone marrow transplant.  I grabbed the first thing I saw, which happened to be a bowl of soup and some crackers.  While checking out, I was made to count how many crackers I had so they could charge me individually for them.  I felt like I was on Spirit airlines where they practically charge you for breathing the air, instead, I was at Cincinnati Children’s hospital.  It is immoral, stupid and just plain wrong to nickel and dime (although really more like Jackson ($20) and Grant ($50) you) and price gouge people already paying thousands of dollars a day for necessary care.  Parents, family members and other patient advocates should be relieved from paying such outrageous prices. 

Some hospitals make more than 25 cents to every patient dollar taken in and can afford to offer reasonably priced food options.  Hospitals that refuse this option, should offer parents/patient advocates coupons or some other discount.  These coupons could be distributed by hospital social workers to ensure accuracy and limit fraudulent/abusive behavior. 

Another way to bring down the price is via competition.  I was excited to see a mobile coffee truck offering better, yet cheaper coffee than that served in the hospital at Stanford. With the rise of the food truck comes a mobile, cheaper and, in many cases, better alternative. 

People may already be in a pretty sad situation without having to worry about being able to eat.  It is our job as human beings to help others in rough times; to ease their pain…as a matter of fact, hospitals are designed FOR this purpose.  

I want to be clear, we are not asking for handouts, or free food.  We are asking for REASONABLE food options.  Making a buck on the back of parents caring for kids should be illegal.  Since it is not illegal, public shaming will have to do.  Let us know what outrageous hospital food options you have witnessed.  The Mighty Lionhearts stand ready to hound hospitals to stop this immoral behavior!  

Please like this page to show your support! 

 

Roar,

The Mighty Lionhearts

Start Your Day Right!

Start your day off right!  Do these three things the first thing in the morning and we guarantee your day and your life will be better!  BREATHE, LAUGH, SWEAT!

Do these 3 things when you very first wake up.  This way you don’t have time to make excuses.  After a few weeks it will become habit and your life will be better!  We have organized our website to help facilitate this ritual.  You can find it under the Mightylionhearts.com Inspiration tab (http://www.mightylionhearts.com/inspiration/).

#1.  Meditate (BREATHE)

Studies show, and life experiences have taught me, that when we meditate we are in a better frame of mind and are better equipped to tackle stressful situations.  With a few minutes of meditation in the morning, whatever the day throws at us becomes challenges instead of a roadblocks.  Again, we recommend doing this the first thing in the morning.  I mean it!  Roll over, grab your computer, type in “calm.com” and get in 10 minutes of guided or unguided meditation.  A few minutes of meditation goes a long way toward our peace of mind.  Every day start your day with this regimen.  Make it part of your ritual, like drinking coffee…become addicted.  Obviously, you can use other meditation websites or no website at all, the point is to calm your mind, center your body and put a positive energy throughout your being.  We like calm.com because you can pick your time as well as the meditation environment.  It has guided or unguided selections as well.  Whatever you use and whatever time you can allot, get in some solid mediation to start your day on the right foot.

#2.  Smile (LAUGH)

Put a smile on your face.  Play with your kids, read a funny article, or whatever makes you smile and laugh.  You can always go to mightylionhearts.com/inspiration and visit hooplaha.com or any of the other websites handpicked for this purpose. I recently heard about a study that found an 8 year-old laughs an average of 45 times a day whereas a 48 year old laughs on average only 5 times a day.   As you get older, you tend not to laugh as much but it doesn't have to be that way!  Tap into your 8 year old self and look at life with the propensity to have fun and laugh when you can :)  Good things are all around us, you just have to look.  Having spent some very dark days in the hospital with our son on his supposed death bed as well as deployed with the military, I know even the darkest places have happiness.  Find that happiness, put the smile on your face and do it the moment you wake up right after meditation.  I don't care what you face during your day, a few minutes of meditation plus a smile equals a better day.

#3.  Exercise (SWEAT)

Get a workout in.  Do not allow yourself an excuse!  I don't care if you had a hard day yesterday, if it's Christmas, your birthday or some other seemingly legitimate reason not to work out.  Do something, anything, just get a workout in!  I don’t expect you to lift like Hanz and Franz or run like Usain Bolt, just get a sweat going.  20 minutes, that's all you need!  30 minutes, even better but whatever you can do, just do something.  I like to mix it up with cardio, core and weights changing from day to day.  Whatever you do, do it to the best of your ability and pat yourself on the back when you’re done.  Again, we recommend getting a sweat and a prolonged sweat at that (at least 20 minutes if at all possible – good for your heart) and remember to cool down.  For you motor heads out there, think of your body like an engine, you need to warm it up AND cool it down for it to work well and last long.  I cool down for at least 5 minutes with a very brisk walk or slow jog so I can bring my heart rate down slowly.   Heart attacks have occurred when  people exercise but do not cool down.  This makes sense to me as your heart rate can drop pretty quickly which is hard on your heart (for more information read this article from the American Heart Association).  Working out activates chemicals in your body that help you throughout the day.  I don't know the exact science but I do know that after we exercise we feel better.  For me, personally, I know that if I've gotten a good sweat in then I am able to handle stress better.  For example, when I have to do any type of public speaking (tested several times), I make sure I get a 20 minute run in.  If I don't get a cardio workout, the nerves get to me and I am more likely to sound like a bumbling idiot.  However, if I get my 20 minute run in, then I'm relaxed, the nerves are gone, I can be myself, think on my feet, and speak with the confidence of Ron Burgundy during the public speaking engagement. 

These habits are most effective together.  Apart they are okay, but together they are extraordinary!

This ritual of 3 will make your day and your life better!  So remember – BREATHE, LAUGH and SWEAT your way to a better you! 

Roar,

The Mighty Lionhearts

Christmas in the Hospital

Make Christmas in the hospital one Buddy the Elf would be proud of!  The Christmas spirit is everywhere, not just in your house. So...

Get in the spirit!!! Decorate your room, a festive room makes more smiles and helps everyone get into the holiday spirit.  Christmas isn't Christmas without a tree, get a small fake tree and decorate it.  Have your Mighty Lionheart make a Christmas ornament.  Of course watch Christmas movies and sing Christmas carols.  Santa hats and reindeer antlers are never a bad call! Christmas lights help drown out the IV machine lights and give off that warm glow that warms your hearts.

Don't be in a rush to get out of the hospital and home for Christmas if your kid is not ready.  Otherwise you may just spend it in the Emergency Room (we know from experience).

Christmas is about giving.  Make and/or get gifts for the hospital staff and include them in your celebration.    Even the old battle axe charge nurse will probably go for a cup of eggnog...well, maybe not eggnog, but you know where I'm going with this.

Pssst, a little Secret - nurses like chocolate and will be more likely to give your child a little more attention if you are the fun room ;)  If appropriate and safe, exchange gifts with other patients.

Lego advent calendars and an Elf on the Shelf are also ways to keep spirits high.

Embrace a Christmas in the hospital! Make it one for the record books :)

Roar,

The Mighty Lionhearts

How to Prepare Visitors

Here at the Mighty Lionhearts Headquarters, a.k.a. our home, we are well versed in the art of handling visitors while our son’s immune system was compromised.  We know how difficult it can be to juggle your priorities…you want to keep your kid’s spirits high by having friends and relatives visit, but you also want to keep them safe!  To aid us in our decision making process, we developed a system to answer questions like, “What should we ask people before we allow them to visit?  Once they are here, what precautionary measures should we take to keep our Mighty Lionheart safe?” 

First and foremost, you the Mighty Lionheart Champion, are the gatekeeper to visitors.  You know your Mighty Lionheart best and know who will add value to their situation and who won’t.  Forget all those who will not help your Mighty Lionheart, there is a time to be courteous to “Aunt Debbie Downer”…this is NOT one of those times!  If a person will not lift your Lionheart’s spirits, put a smile on their face, or help in a valuable way, then they do not visit, period.  You do not have the time or energy to waste on them right now, their downer ways will have to wait.  Now is a good time to check with your son’s BMT Attending Doctor (click here for Hierarchy of Doctors explanation) to ensure they can have visitors and what precautions should be taken.

 We instituted the following policies to ensure our Mighty Lionheart was kept as safe as possible while still allowing valuable people to visit and help.  These policies were forged out of years of trials and errors and, although, you will develop your own policies with the help of your doctors, feel free to use these as a starting point.

What should we ask people before we allow them to visit?  Anyone taking offense to these questions should be automatically banned because they clearly do not understand the situation and cannot be trusted to do what is right for your Mighty Lionheart!

1.  The obvious, “Are you sick?  Have you been sick in the last week?”

“Do you have a cough, runny nose, or sore throat?  Have you had any live virus vaccinations to include the flu mist in the last two weeks?”

2.  Have you been around any sick people?  (If the visit is a few days away, ask them to stay away from sick people and if it cannot be helped, no biggie, just delay the visit).

3.  Please change into fresh clean clothes just before heading over?

4.  If they are coming from out of town, let them know that if they get sick while traveling, or while there, they will need to stay at a hotel and won’t be able to visit (be prepared for this).

a.  NOTE:  We mandated folks who traveled on planes (or with a lot of people) stay at a hotel for 24 hours before visiting the house.  This was not based on medical necessity or even fact, but it did make us feel better and let people know the severity of the situation.

5.  Inform your future guests you are a no-shoe household and will be asking them to take off their shoes so plan footwear accordingly.

a.  NOTE:  We are a firm no-shoe household due to the debris collected on the bottom of ones shoe that is then trekked about your house for your child to play in.  And it is a well-documented phenomena that kids love crawling on the ground.

Once they are here, what precautionary measures should we ask them to take to keep our Mighty Lionheart safe?” 

1.   Have them remove their shoes when they come in the front door.

2.   Kindly show them to the bathroom to wash their hands.

a.  Make sure you have anti-bacterial soap and fresh towels for them to dry their hands (we started using disposable hand towels to ensure we didn’t pass anything via our hand towels).

3.   If they are fresh off the road, remind them to change their clothes before beginning your visit.  In some circumstances, a shower may be called for. 

4.   Be vigilant, if someone looks and/or sounds sick, don’t take the chance.  Simply tell them you’re sure it’s nothing but for your kiddo’s sake you can’t take the chance. And once again, if they have any issues with this, they simply do not understand and should not visit.

Please be sure to sign up for Mighty updates here to get the latest blogs, resources, and gear!

ROAR!

Mighty Lionhearts

TRUST BUT VERIFY!

This aviation motto ensures pilots complete critical tasks performed by automation or another pilot.  It was popularized during the Cold War by Ronald Reagan when dealing with the Russians and the potential of nuclear war Russians (the saying is also a Russian proverb which is why Reagan chose to use it no doubt).

This motto became EXTREMELY important to us throughout our hospital stays!  During these adventures, by following this motto, we routinely caught mistakes with medications, dosing, allergies, lab tests, and the list goes on.  “TRUST BUT VERIFY!” 

During one particular inpatient stay at Cincinnati Children’s Hospital, we caught an error with our son’s medication EVERY DAY, 10 days in a row!  This should make you take note as Cincinnati Children’s is a top tier children’s hospital.  If it is happening there, it is happening in your hospital. 

Why does this happen?  Hospitals have thousands upon thousands of orders that have to be input correctly, made correctly, delivered correctly and administered correctly.  There are many moving parts and, unfortunately, things get dropped.  Attending Doctors are usually extremely smart and make the best decisions regarding treatment and medication they can.  However, once they make the decision or treatment plan, it is typically out of their hands and into the hands of other hospital staff (unsure of the hierarchy of doctors?  Click here).  Sometimes the task of writing the actual orders prescribed by the Attending doctor is handed down to a resident or nurse practitioner who, hopefully, understand the order and input it correctly.  Then, the order must get filled, delivered and administered at the right time.  It becomes an intricate ballet of sorts with people running here and there and everyone having a specific job that must be done at exactly the right time for the patient to get the prescribed treatment. 

Hospitals fall victim to the old saying, “Everyone, Someone, Anyone, and NO ONE”.  Everyone was sure someone did it, when anyone could have done it, but NO ONE actually did it.  You are the safety net, be vigilant, be aware, take notes, ensure critical tasks are being completed correctly!

It is up to you, the Mighty Lionheart Champion, to advocate for and be a champion for your Mighty Lionheart (the patient).  You are the only constant!  Doctors and nurses come and go, but you remain and have the most interest at getting it right.  Learn as much as you can about what your doctor’s orders are and ensure they are followed from day one!

Let us know your thoughts, experiences and questions here! 

If you would like to order the TRUST BUT VERIFY poster to display proudly in your hospital room to reinforce this principle to all

Sometimes nurses can get testy when you are asking them questions because they have so much going on, but if you let them know from the beginning what you are going to do and what they can expect from you, things typically run smoother.  To this end, you can let nurses and hospital staff know you WILL be double checking their work, especially critical tasks, by displaying our TRUST BUT VERIFY poster (click here) as well as communicating with them at your first meeting to let them know your motto:)!

Roar!

Mighty Lionhearts

Do Illnesses Take Weekends Off?

When the sun goes down on Friday evening, inpatients in hospitals around the country batten down the hatches.

Do illnesses take weekends off?  Of course not…so why do hospitals?

Have you ever been in a hospital on a Friday Night or Saturday morning?  If you have, no doubt you have seen the skeletal crew making up the ghost town hospitals fade into on the weekend.   The dilapidated state hospitals fall into during this time is dangerous to patients! 

We have experienced many doctors' preference to "wait and see" during this precious weekend time period.  They have decided more than a couple times to "wait and see" if our son's problems did constitute an emergency.  On one specific occasion, they decided to "wait and see" if our son's inability to control his bowels and stools (i.e. the poor little guy had it coming out both ends) was an emergency rather than call the specialist needed to ascertain what might be causing this difficult situation (we will call this specialist Dr. Tom).   God forbid we bother Dr. Tom!  Who cares if this kid might have severe Grapht Versus Host Disease of the gut and the only way to determine this is for Dr. Tom to be called in.  Dr. Tom must have time for his boat and his Porsche.   Apparently, weekends are sacred in the medical world and we would rather make patients suffer than bother Dr. Tom!  Don't get me wrong, I am all for boats and Porsche's, but don’t patients matter more?   And I realize it may not be Dr. Tom's fault the hospital is improperly staffed over the weekend, but whoever does determine the staffing over the weekend should really be made to stay in the hospital over the weekend when they cannot control their bowels or keep any food down, throw up their NG tube (NasoGastric feeding tube) and have over 40 diapers in a 24 hour period (so much so that they are bleeding continuously from their rectum).  After a hospital stay of this kind, I would bet their decision to inadequately staff the hospital over the weekend may change. 

Have no fear, I’m sure the doctors and hospital administrators have told AIDS, cancer, Grapht Versus Host Disease (GVHD) as well as all chronic health issues to take Saturday and Sunday off and to come back Monday morning.  So, we are okay with not actively treating issues we are uncertain about 2 out of every 7 days?  This means we are not actively treating chronic or longer term diseases/illnesses 29% of the time! 

Furthermore, if you take into account nighttime, hospitals only actively fight 36% of the time!!!  (There are 168 hours in a week. * Hospitals actively fight chronic diseases when Attending doctors are at the hospital working), conservatively, 60 hours a week.  60/168 = 36%.)  Is 36% good enough?  Can we expect to beat these extremely deadly chronic illnesses by only fighting them 36% of the time? 

Because both have to do with life or death, I equate illnesses to war.  Having graduated from the Air Force Academy, served over 11 years on active duty and been involved in our latest conflicts, I can say the military does not take nights or weekends off during war!  Okay, okay, maybe the Navy does, but the rest of us do not (I never miss a chance to poke fun of the Navy!).  Perhaps most of our productive work takes place during nighttime and weekends. 

It is no wonder there is a “weekend effect” (for more info on the weekend effect click here ) http://www.kevinmd.com/blog/2013/11/solving-weekend-effect-patients-hospital.html which basically means if you have a weekend hospital stay you are at further risk of dying or at the very least lengthening your hospital stay.  This is due to the fact many testing facilities within the hospital close unless an “emergency” arises.  The problem is, when dealing with chronic illnesses like GVHD, doctors don’t know WHEN it is an emergency or not unless they have access to the testing that is shut down for the weekend.  And since they don’t want to call their fellow doctors and hospital coworkers in on a Saturday and cause undue strife, they take a delayed approach and HOPE it’s not an emergency.  In our 9 year in-depth hospital experience, we have learned chronic illnesses need more than 35% of our time to fight them and our patients are suffering for this inadequacy. 

The solution is not popular with hospital staff, but GVHD doesn’t care, AIDS doesn’t care, cancer doesn’t care.  We have to develop a system where doctors have access to the testing they need to determine issues 24 hours a day, 7 days a week.  If Las Vegas has been able to conquer the effects of the night, surely the brainiacs who work in hospitals can at least copy the sharks of Vegas.  I’m talking lighting, attitude, but more importantly testing.  Obviously, hospitals need to work on this and insurance companies as well as patients need to pressure them.  Insurance companies should apply pressure knowing that, in many cases, 2 out of 7 days a patient is not being actively treated yet the insurance company is still getting billed for the stay.  Patients obviously know more time spent in the hospital is counterproductive to their health and means more time away from family, work, the pool and Starbucks.  It also means more bedsores and the subjection to more hospital viruses among other things. 

I believe we need hospital boards to shift their mindsets to that of military war staffs and start fighting illnesses 24 hours a day, 7 days a week.  I realize Dr. Tom needs time for his boat and Porsche, but that doesn’t mean the hospital stops.  Guess what?  If Maverick the fighter pilot isn’t providing support to the ground soldier, there is another guy in his place providing support.  So Dr. Tom go boating, but let’s get Dr. Steve in so while you’re out catching trout, we can fight the battles needing fought and stop “waiting and seeing!”  Chronic illnesses don’t take weekends off and neither should we!

Please sign up for our mailing list (www.mightylionhearts.com/contact) for more information on how we can improve the getting better process. 

Let us know your thoughts and experiences!

Roar,

Mighty Lionhearts

*This calculation is derived from a 12 hour, 5 day work week.