Fake news?

https://www.bbc.com/future/article/20200406-why-smart-people-believe-coronavirus-myths

A few things to talk about today. I have seen this mostly on friends of family comments. Many people believing fake news. That this is somehow a hoax. Or that this was made in a lab and brought over from  China. That all of this is made up and we need to open up the states now because people are losing their livelihoods. Again, I get that. I know there needs to be a way to open up the states. But, let me just explain something here, this is not fake news. People are not making up the numbers of people going in to the hospitals. Or the numbers of people dying. These are real people with real families. And like a lot of families parents of kids with transplants are especially scared. We don't know how this will affect our kids. Ben not only has a heart transplant, he also has asthma (thanks to my genes. Yay me!) So, not only would this be hard on his heart, it is a respiratory illness, that would affect his lungs! People with underlying respiratory issues do not do well.

So why are people thinking this is fake news? Well, that's a good question. I linked to an article at the top that sort of goes in to detail about it. But this goes into many fallacies. People like to believe in what others believe in. So, if they see others sharing stories saying that this is fake news and that this virus was made in a lab in China and brought over here, they start to believe it (bandwagon fallacy) and especially if they see this repeated throughout many different sources. Even if the line is repeated, but being debunked, hearing it again, just causes them to believe it even more. https://thebestschools.org/magazine/15-logical-fallacies-know/

Why does this matter at all? Why am I talking about this now? Well, there have been protests in many cities now. People are protesting that their government is staying shut down. And look, if anyone knows me, you know I am alllll for a good protest when it is for something that matters. I went to the women's march with my daughter, I have protested other things. For things that matter, I am with you 100%. And I am empathizing with these people. I understand how hard it can be to be without a paycheck and not know when the next one will be. Not know when your next meal will be because you don't know if you will get paid or get unemployment. BUT....yep, there's that word....but, here is the thing, by doing this, by protesting during a time of pandemic,  you are just hastening the second wave. And there will be a second wave. Maybe you don't know much about the 1918 flu. The first wave was bad. The second wave was worse. The third wave was not as bad. https://www.history.com/topics/world-war-i/1918-flu-pandemic

Why does this matter? Because it will overwhelm our healthcare system before we have even had a chance to get proper PPE for them. Before we have even had a chance to get McCormick place set up and ready for patients (they have accepted the first 5 patients. I don't know how ready they are to handle more.) It will overwhelm already exhausted doctors and nurses. Kentucky had protesters and know they saw a second wave of 273 more people infected and 148 deaths. This brings their total to 2.960 infected, which might not seem like a lot, when in Illinois we are already at over 30,000 infected. But, this is why having protestors out and about means that cases will keep rising. If this happens in Illinois, our already overworked nurses will be exhausted to the point of sickness and unable to taker care of anyone https://thehill.com/changing-america/well-being/prevention-cures/493707-kentucky-sees-highest-spike-in-coronavirus-cases and again, who will take care of the ill when the nurses and doctors need taking care of?

As I said before, Ben was in the doctors office a few days ago. We just got confirmation it was not covid, he has sapovirus. One of the amazing nurses called us yesterday to tell us and check on him. Then one of his cardiology nurses called to check on him. These people are the ones still working, taking care of kids like him while people are out protesting that they have to stay inside so they don't get themselves and others sick. Look at Kentucky. Just look. That is what is happening. When you go protest that you want to go out and get a haircut and go golf (real signs seen at protests), what you are saying to the nurses and doctors putting their lives on the line is "screw you, my golf time is worth more than your life." Because they are the frontline workers. They are the ones that will be taking care of you when you get sick. And if protests keep happening, more and more people WILL get sick. And if they go home and are asymptomatic, or even sick but not showing signs quite yet, then pass it to their son who works at the grocery store, and you go shopping, then you bring it home to your child who you decide is fine to go out and play with the neighbors, you are thereby infecting a whole community. This is not who we are. We are better than this!

I wanted to write something different for National Pediatric Transplant Week. I wanted to write about how well Ben is doing. I wanted to write about how to make a difference in supporting organ donation, how to get people to be more aware of the organ donation process. But this was just to important to me. I have too many friends that are doctors and nurses. And especially the transplant doctors and nurses that are still out there working to keep our kids healthy. We want them to stay healthy and not have to worry about if a protestor is going to be stopping them from getting in to their hospital. Or if they are going to get sick from walking by protestors. And this does matter for organ donors too because the more people that are getting sick and dying from covid, the less organ donors there are. Organ donation from deceased donors is down 50% right now. There are multiple reasons for this, fewer accidents because of less people on the road (always a good thing, obviously) death due to covid is a disqualifier, and fewer people are being placed on the list, which is sad (and probably more reasons as well.) We still need people to say yes to life! And we still need our nurses, doctors, anesthesiologists, respiratory therapists and all other support staff healthy so that our children can have these life saving transplants!

Ben and his sister Klara engineering the other day

Opening up the state? Should or shouldn't we?

 

First off I will tell you, I am not a doctor, I do not know what the right answer is. I am also not an economist, fact is, I hate math. So, I really don't know what to do about the economy. But, I do want to share my perspective and the perspective of some of my transplant friends. I hear a lot about how there are not that many new cases and we should start opening up the economy, even if it is little by little. That we should let the healthy people who can go back to work, go back to work and the elderly and immunocompromised stay home. Many people do agree that this school year has to be over. Kids cannot be back in school. Kids are not sanitary and they are in large groups, they will bring diseases, any diseases whether COVID or other diseases, back to their family and it will spread and overwhelm our healthcare system again. Right now, Illinois still is getting new cases of Covid every day. Today, April 18, 2020, In Illinois 125 people lost their life from Covid bringing the total deaths to 1,259 since the start. We also had 1.585 new cases today, bringing our total cases to 29,160. So, we have not bent the curve enough to feel  safe going back to normal. I don't know if, I personally, will ever feel safe going back to normal. I do know we can not sustain this way of life forever, obviously. I have family that is hurting financially from this too, so I get where others are coming from when they say "we need to open everything back up. We need to make money." People are scared. People need to know when their next paycheck will be, or if they can file for unemployment? Or how they will pay for rent, medications, food, electricity. I get it, I truly do! We are starting to worry about how we will pay for a few of those things as well. Again, that is why I say I do not know what the answer is.

Because you see, I have seen my son on a ventilator. I am not sure if you have ever seen a child on a ventilator, but it is not fun. Even less fun when it is your 1 month old baby. Have you ever seen nurses fix tons of lines of medicine for your child? They are truly miracle workers. I get stressed trying to untangle my headphones. Ben had tons of lines of medicine as you can see in the pictures above. I don't know how a *healthy* child would deal with covid in the hospital, I do know that with Ben, he is on a few medications that, if he was sedated and vented, would have to be given somehow, I am guessing through IV. There are some myths going around about children and covid. You CAN in fact be there with your child if they are hospitalized. Children are not allowed to make decisions for themselves, so a parent does have to be present, BUT, it will only be one parent, and that parent is the only one that stays. The whole time. Are you prepared to stay with your child if they are hospitalized and ventilated? I was able to get breaks and switch off with my husband. And as you can see above, Ben's sisters got to visit him for Christmas, as long as they wore masks. In this situation, I don't think they would be seeing him if he was hospitalized. Children are not allowed in the hospitals at all anymore to visit patients. There are very strict rules right now. Can you imagine being away from your other children for that long? What if you were the one to get sick because we decided to open everything up and "liberate Illinois"? I don't mean to scare everyone, but this virus is unknown. We don't have a vaccine for it. We don't have an antiviral for it. All we have is supportive care. And hope. Hope that the person that gets it will get better. If you are healthy, you may be able to fight it off. Some healthy people aren't even that lucky. Even healthy people are dying. If you are unhealthy, it's even harder to fight it off. You may end up in the ICU fighting for your life. There have been posts about doctors using their own cell phones to call a patients loved one for them to talk to for the last time, because they are alone in the hospital.

Let's also talk about healthcare workers for a minute. Everyone wants to open up the cities, and I get it, I truly do. I want to go back to seeing my babies I work with. I miss seeing them in person. I miss interacting with them. I miss helping the parents in a more meaningful way. But, healthcare workers are already being overwhelmed because they don't have the personal protective equipment that they need (PPE) for the sick people going in. No, this isn't a lie to get the federal government to give them more. They really are running that low because of all the panic buyers buying  them, or all the people that bought them up and sold them at a much higher price. If we open everything up right away, and then people start getting sick from being too close to others, we all severely overwhelm our healthcare workers, getting them sick in the process, and then who will take care of us? Who will take care of the medically fragile, the ones who really need healthcare assistance during this time?

We had a scare yesterday and one of our friends had a scare the day before. Our friends son had a fever, lethargy and some cold symptoms. They were sent to Lurie Children's hospital for monitoring, because it could possibly be covid, and since he was a transplant kid, we do not take this lightly. Yesterday, Ben woke up with a fever of 102 and diarrhea. After calling the cardiology team they decided that it didn't SOUND like covid, but since diarrhea *can* be a symptom they wanted labs done and for him to be seen by his pediatrician and to call if he got any worse and they would have him seen at Lurie ER. It turns out, he likely has a GI virus, and our friends son (thankfully!) does not have covid either!

This is where we are now. Anytime we go out, we change out of our clothes, take a shower, wipe down everything we had touched and change in to new clothes. We wear masks to go in to the doctor offices we wipe everything down in our house, instant mopping, wiping down groceries, just in case.

So, when people say we need to just open up the cities and states, and those that are healthy can work and those that are elderly or immunocompromised can stay home, believe me, I understand that we want to get things back to normal and people want to earn money. But what I hear is, "us healthy people need money even if it means everyone else gets sick and transfers it to your child." Which makes me sad. Our team has always told me, "we didn't give him this transplant for him to live in a bubble, we gave him this transplant for him to live his life." But, if everyone else can't obey social distancing rules (which from what I have seen in some cities, some people can't) then it makes it harder to open up the cities safely and the virus just keeps traveling from person to person getting everyone sick, and in turn getting our most vulnerable sick. And when it comes down to it, my worst fear is that because transplant kids (and adults) have preexisting conditions, they will be the last ones to get a ventilator because "someone healthy has a better chance of living, so they need it more."

So, do I want the cities to open back up? Right now, no. Even with my kids driving me crazy at home. I would rather them drive me crazy at home and still be alive. Do I want us shut down forever? Of course not! There has got to be some middle ground though. Some way where we can make sure that as we open everything up, people are being reasonable. The reason the state and city parks were shut down was because even after the governor said "I am expecting everyone to take reasonable precautions and not gather in groups," people treated this like summer break and gathered in huge groups at parks. We saw it as we would drive by. We would see people playing football at the park, soccer, running around and wrestling. So, he had to actually make it a RULE to shut those down. So, I would like to see some rules in place before everything opens up, and if the rules aren't listed too, it gets shut down again.

I'll end with this quote, attributed to many, "Your liberty to swing your fist ends just where my nose begins." In general it conveys the principle that your right to exercise whatever “liberty” you think you’re entitled to ends when that liberty threatens my (or others) life and safety. https://www.dailykos.com/stories/2020/4/16/1937928/-Dear-right-wing-protesters-your-liberty-to-swing-your-fist-ends-just-where-my-nose-begins