Every Storm Runs Out of Rain: Emerging from Virus Lockdowns and Vulnerable Populations

How are we going to end the COVID-19 virus lockdowns?  When are we going to go back to normal life?  You are surely wondering this, and your children are certainly asking you!  My teenager and ten year old would like to go back to their soccer games and birthday parties, and to be honest, so would I.  We miss human connection, and the opportunity to be with our tribe.  We miss pot lucks and barbecues, bake sales and tournaments.  We miss it all.  We even miss the things we used to complain about.

People are getting antsy in their second month of home confinement.  The common consensus is that with time, testing and slowly phasing out stay-at-home restrictions that we as a country will get back to normal.  I hate to be the one to break this to you, but this is a very rosy scenario, one that doesn’t take into account states and cities that are harder hit than others.  There’s no magic wand.  It’s not going to all go back to normal all at once.  In fact, it may not ever look the same in our lifetimes.

Most experts are saying normal life won’t resume until 2022.  That’s a long time. I have had a lot of anxiety about re-entering society.  As the mom of a child with multiple medical issues I’m worried about entering society too soon.  My daughter is one of the 20% of Americans who are considered “At Risk,”  along with cancer patients, diabetics, and people with auto-immune disease.  We already live with unpredictable futures and social distance.  We call it the Cost of Living Vibrantly.  If she gets sick, we go to the hospital. If one of her friends or our family gets sick, they notify us and we stay away. We’ve missed family gatherings at Thanksgiving and Easter multiple years due to family illness.  She’s been hospitalized over her birthday and Memorial Day. Everything can be dropped at a moment’s notice,  and though it is disappointing, it is necessary.  My daughter Wendy is exceptionally good at rolling with the punches, and it has served her well throughout her life because she’s missed out on a lot of events.

I’ve recently read a quote from Maya Angelou, who was quoting from a Country song:

“Every Storm Runs Out of Rain.”

It’s a version of “This too shall pass,” the idea that nothing is permanent, that nothing will last forever.  Winston Churchill once famously said, “If you’re going through Hell, keep going.”  But as I was thinking about the Maya Angelou quote more, I got to thinking that maybe we should think about some areas of the country right now as being rainier than others.  If New York City is suffering a deluge, South Dakota is in a drizzle.  Storms cancel events like concerts, soccer games, and other social gatherings.  When the rain or snow clears, and blue skies break through, people can start to go outside and see their friends.   It will be easier to reopen some parts of the country than others, and this is clearly an oversimplification, but it can in some ways be helpful. The question, “Should I go to Boston for my doctor’s appointment?” can be answered with the response, “Nope. Still too rainy.”

People, too, can be too rainy, or can have their own personal rainstorms. I like to think of Olaf from Frozen with his own personal flurry.  Where we live in southern Massachusetts might be ready to reopen, it might be considered “sunny,” but for my daughter, as well as for other people in the “At Risk” population, there’s still a chance for storms.  So we decide to stay home.  There will be a million situations in the next two years when we need to make this kind of decision, and a million situations among all the other twenty percent of people who have a medical condition.  It will be a patchwork quilt of decisions concerning risk and reward.

I would love it if our leaders considered a special recommendation for the “At Risk” population, to know when it’s safe to venture out.  When one out of every five people has a reason to stay inside, it makes sense to know when it’s Partly Cloudy, Chance of Rain, or a violent storm.  The combination of what the rain outside will be, along with personal rain clouds of people, will allow us to make better decisions.

I chafe at the idea that some people are posing that my child’s death, or the death of an elderly citizen, a war vet, or someone with underlying health conditions is an acceptable risk for the country to reopen in order to save the economy. I’ve spent a lot of my life keeping my own daughter alive.  There needs to be special measures put into place to protect as many citizens as possible, for as long as possible.  As I said in my last post, the people who are determining acceptable risk consider their “only” is actually my “everything.”  While I understand there is no playbook available on how re-opening is supposed to go, I beg the people who make these decisions to keep the At Risk population in their calculations for re-opening towns, cities, and states.

Please press your elected officials to consider the At Risk Populations when looking to emerge from Lockdown and stay at home conditions.  Thank you.

 

 

Fear and Resilience: Extreme Social Distancing

Greetings from Northern Vermont,

It has been a crazy week, and I’ve had some time to reflect.  Last week there was a confirmed case connected to Wendy’s high school, and as per her doctor’s recommendation we pulled her out, got a doctor’s note, and began the process of getting her tutored.  I asked if we could get the tutoring remotely because I planned on bringing her up to Vermont to ride out the coronavirus up here.

Because of Wendy’s multiple medical issues, even though she is young and in shape, she is in the twenty percent of people who are at high risk. It hurts my heart when people say that “only” twenty percent are at risk, because their “only” is my “everything.”  When I had spoken to her doctor, she laid it out very clearly to me:  there  is no vaccine, there is no treatment, and if you end up on ECMO, you are going to die, because they can’t do anything else.

So as far as I was concerned, we needed to keep her safe, no matter what.  She and her sister are my everything, not just a portion of the at risk population.

When Wendy called me on Monday morning (3/9) because of the coronavirus case connected to her school, I had just arrived in my parking lot of my own school (I am a middle school teacher at a private school a few miles away.) I informed my front office that I had to go back, told Wendy I would drive around to the back of the school, and then bring her home. She hasn’t been back since.

I then went to my own principal, and together we worked out a “remote teaching” schedule. The computer teacher put a large screen in my room, and colleagues manned the room on their prep periods while I taught classes from my house. This way, I wasn’t bringing home the virus to my daughter without knowing it.  I taught this way for the remainder of the week, until the 13th, and now the school is on our regularly scheduled vacation.  I am so indebted to my colleagues for doing this for me.  But to be honest, I still wasn’t sleeping.  I was worried that my other daughter Penny or my husband would bring home the virus.    We began to cancel social engagements left and right, soccer practices, karate classes, yoga, etc.  My husband asked to work from home, but still had to go in a few times to check on things.

I pulled her younger, healthy sister out of school on Wednesday after Governor Baker said that students would not be penalized for their absences, and when I asked for guidelines on how to teach Penny I was told that teachers were instructed not to give out any work, or any guidelines.  Schools have since been closed by the governor until April 7, but they have not been given any work, and will not be given any in the name of equity, but also because teachers’ unions don’t want to set a precedent.  Wednesday night President Trump gave his Oval Office address and the NBA shut down for the season.  Stock futures plummeted.

On Thursday, 3/12, after I taught my online classes, we made our way up to Vermont.   I had packed the car early in the morning.  Five days’ worth of clothes for each of us, lots of arts and crafts, a few puzzles, some food items I knew Michael wouldn’t eat, all of Wendy’s medical supplies, some games, school books, snow pants and outdoor gear, and yoga mats.  I made clear to the girls that there would be no stops.  No bathroom, no gas, we were travelling door-to-door.  After we unpacked at my parents’ house (they are not here, they’re snowbirds, splitting their year between Vermont and Florida,) I looked to see what they had and what I would need.  The answer:  they didn’t have that much and I was going to need to do a lot of buying.

This was a setback, as I had already prepared our house in Massachusetts.  Now I had to recalculate.  I already had all of Wendy’s medical supplies, but we pretty much needed to get all the food, and I was planning on being here for a month.  We went to the supermarket and bought enough for four weeks of staying here.  People looked at us like we were crazy.  Who needs all that food?  We do, because I don’t plan on going back out.

Here’s the deal.  There are people who have coronavirus with no symptoms, or minimal symptoms, and after testing, scientists at Princeton have found that the coronavirus can stay alive for up to three days on stainless steel and plastic.  So someone who doesn’t know they are sick can leave the virus on an object three days ago, and my kid can get sick from it today.  That’s terrifying.

Moving up to Vermont was strictly a numbers game.  There are fewer people in the state of Vermont than there are within the city limits of Boston.  More people, more potential illness. Fewer people, less potential.

But when I see citizen continue to go to amusement parks, and wearing green to go to  Saint Patrick’s Day parties at bars, or being told to continue going out to dinner, all I want to tell them is PLEASE STAY HOME.  Your social distancing will lead to fewer cases all at once, and fewer cases all at once means that our medical system won’t collapse under the strain.

My friend Susan lives in Rome, and today (3/17) I was going to fly on a plane and visit with her. She works at the UN, in the FAO, and I was going to speak to a committee there about foodborne illness, which is originally how Wendy got sick.  Through her unfortunate experience of living in the age of coronavirus in Italy, Susan has been coaching me on what to expect, how to prepare, and when I suggested Vermont, she thought it was the right move.  In Italy the medical system has collapsed, and the entire country is in lock down, because Italians didn’t take it seriously, didn’t act fast enough. 

We can do better.  We have to do better.

Thank God my parents have this house.  Thank God I have access to it.  Like everyone else, I’m trying to navigate the daily activities of my kids so we all don’t go crazy. We have a schedule, they have academics, and I’m grading papers and working toward my virtual schooling that I will be transitioning to.  We go for daily walks, we are working on a 1000 piece puzzle of Star Wars. After dinner we play UNO and watch something on Netflix on a laptop. (My parents don’t have cable.) We eat lunch and dinner together, and I’m trying to teach them to monitor their snacks, how to do laundry, and how to entertain themselves.

I’ve started offering yoga every morning at 9 am on Facebook Live, as a way to connect to the outside world, and it’s nice to connect to my friends and bring something good into their lives, because like them, I’m in self-isolation.  But for us it’s pretty extreme and the potential consequences are dire.

Honestly, I’m finally sleeping again because we are here, though I miss my husband who is still at our home, with our cats, and who isn’t sure when he will be able to make it up.  Wendy thanked me when we got here, she had been worried too. The girls only want limited knowledge of what is going on in the world, and they don’t want me to talk about number of deaths.  so a lot of that information I have to keep to myself.

Wendy has mentioned to me that in a way she feels like a princess in a tower, like in the fairy tales. I think that’s an accurate way of putting it.  It’s better than being a princess in a hospital bed.  So I guess if we are working through the roles of the fairy tale, then I’m playing the part of both the knight and the dragon, protecting and guarding the kids.

I have no way of knowing what will happen, I can only do what I can to protect my kids.

Please, don’t go out unless you need to.  Practice social distancing so kids like my Wendy, and families like my family, don’t have to practice Extreme Social distancing.  We are scared enough every day as it is.

 

 

 

 

Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

•  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
• Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
• Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
• Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
• Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
• Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
• Interview key new staff members who will interact with families, like nurse managers, etc.
• Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.

 

 

 

Please Advocate With Me

There’s been a lot going on in the news, and here are some of the things that I’m worried about.  Let’s start with CHIP.

CHIP stands for Children’s Health Insurance Program.  It is a jointly funded program, so each state shares the cost with the Federal Government.  Founded in 1997, it was designed to help the working poor afford health care for their kids. This insurance is for children only and you can only get CHIP for your kids if you don’t qualify for Medicaid but you can’t afford private insurance.  In other words, you need to be slightly above the poverty line to qualify for CHIP.

Congress let that funding expire as of September 30 of this year, leaving states to either carry 100% of the funding or let the program die.  This is a program that gets kids physicals, gets them vaccines, or gets them to the dentist.  It keeps them healthy, and personally I’m a big advocate of healthy kids.   When kids are healthy and well fed, they learn better, they do better and they keep other kids around them healthier too.  To me, it is worth a few extra pennies of taxes.  It’s for children.  It’s the responsibility of all of us to keep our children safe, and when I say our children, I mean ALL children.

Then this last Wednesday, President Trump signed an executive order that  instructs federal agencies to look for ways to expand the use of association health plans and broaden the definition of short term insurance.  As a result, the Trump administration could make cheaper plans with less generous benefits more widely available. This undermines the system of the Affordable Care Act, where the stronger and healthier help to bolster the sicker and weaker, with the idea that someday they will also be sick and weak and they will need a robust health insurance in place to cover them in as well.  That’s the way health insurance works.  you pay now, when you’re well, betting that someday you will be sick.

And eventually, someday comes.

It’s come for my family.  I am the mother of a chronically ill kid who was born healthy but acquired a bacteria that wrecked her little three-year-old body, causing extensive organ damage and resulting in a kidney transplant among other things.  The executive order that the president signed will undermine my ability to keep her healthcare.  It will make premiums go way up.  It will make it increasingly difficult for my husband or me to change jobs.

Imagine what the combination of the expiration of CHIP and the Executive Order signed this week will do to the working poor, with a child who has asthma, or a peanut allergy, or was born premature.

Is it possible to convince people that it is in the interest of society to care for our sickest and weakest members, to care for the health of children?  I think it is.  I’m their advocate, I speak for them, that is literally what advocate means.  It means, “I give voice to.”  And so, I am speaking for the chronically ill kids, the working poor kids, the kids who are the sickest and the weakest among us.

I am asking you to call your Members of Congress to re-instate CHIP.

I am asking you to contact the White House to ask the president to revoke the Executive Order.

It is the job of the strong and stable to bolster the weak and the sick.

That’s what communities do, and this country is just one big community.

Please Advocate with me.