Biopsy time

 So, Ben is scheduled for his normal biopsy Dec 28 (getting it in right before the New Year to take advantage of our deductible, yay!) But, they have a new practice where you have to have a covid test 72 hours before the biopsy. Well, that puts us at Christmas and no one is open Christmas. So they said we could do it on that Saturday. Whew! The last thing we want to do is torture him on Christmas. The other thing is they have new restrictions in due to both covid AND fly. Only one parent per child. O this is a conundrum. I mean, one of us would've had to stay with Klara and Abby anyways since they'll be home for Christmas break. And one of us will have to go with Ben. Traditionally I have been the one going with Ben to every biopsy. But, Joe usually joins us for part of it. This year, thats not possible, because covid. I hate this! I want us to both be there. I am thinking of just having Joe go. But on the other hand, I am pretty superstitions. I always bring the same bag, with the same items in it, and I always go, and he has never had rejection yet (knock on wood). And my fear is if I don't do these things, he will have rejection. I know, silly thoughts. But, that is what is in the back of my anxiety riddled mind. I should just get it over with and tell Joe to take him nd whatever happens happens and we will deal with it. But, its really hard for me to let go of those superstitions as they help me not be so anxious. Stupid covid! One thing I am glad is, he will not miss any school for it. His original date was Jan 4. I asked them to move it back because that was his first day back after winter break. Which was fine. So, here's hoping for no illnesses or anything before Dec 28. Which hopefully will be easy since he is online schooling! 

A queasy feeling

Do you ever get that feeling in your stomach like no answer you pick is going to be the right one and all of the answers are wrong so you have to pick the best wrong one? Yeah, that’s how I’ve been feeling. Since the last post I've been overthinking things even more. Anxiety has been at an all time high. I was just hoping for one our doctors to say "no, Ben and his siblings can not go to school." So I didn't have to make that decision for them and I could just say "see the doctor says no, sorry. We can't do anything about it." But, that didn't happen. Abby is about to turn 13 and go in to 8th grade. Her school WAS set to start Aug 20. But they moved to remote learning until October 30. Which made me feel a whole lot better. But that means I have to decide now, what do I do about Ben and Klara? And I have to make this decision, because their school is set to open on Aug 31. You can imagine the anxiety I feel about this. There is no right answer, so I have to pick the best wrong answer. Which when it's my child's life on the line, is not a good feeling. Needless to say, I have been up a lot of nights going over every which way this should go, and I still have no idea what to do. 

And as if this isn't hard enough, I am hearing story after story after story of kids who have started the first day of school in other states, and they go back to school and someone has a positive covid test on the first day of school. This does not instill confidence in me sending my kids to school when I have a kid with a heart transplant. And I feel like Ben needs the socialization as much as anyone else. (We have been having some behavioral issues around here that I think would be made SO much better if he had a friend his own age he could play with.) BUT, what would that even look like? How is he going to socialize from 6 feet away from his friends, while wearing a mask. Plus, the idea of kids ages 6-9 in his classroom keeping a mask on all day....I have my doubts that that will happen (which is also terrifying, seeing as how Ben could easily get sick then). I think I am thinking more of the idea of how it used to be, not how it will be, and I think Klara is too when she tells me how much she misses her friends and wants to go back to school. I totally get that. She's almost 12. She is a social butterfly and wants to be around all the people. But, how can I take that risk, knowing that she could bring something home? Have you ever seen a child on a ventilator? I have. I saw my baby on a ventilator for about a month. This is Ben on the ventilator at 1 month old. It's not here to scare you. Well, maybe a little bit to scare you. But really, to show you that if you think you can't breathe with a mask on, a ventilator is so much worse! And I am not talking about people with legitimate medical reasons not to wear a mask. I am talking about people who say they don't need to because it infringes upon their rights. It will feel a whole lot worse if you get covid and have so much trouble breathing that you need a ventilator. 

The thing that makes me the saddest and the angriest is the selfishness of some people. If everyone that is able to, would wear a mask, this could have been over ages ago. But, now we are seeing spikes in our numbers again here in Illinois. Just when I thought it would be safe to go to school, and back to face to face sessions for Early Intervention, I am taking a step back and reexamining things thinking, "hmmm, maybe not so much. Especially certain areas." People are having huge parties, not wearing masks, going to other states and out and about closer than 6 feet apart. And I get it if you are with your own family, or friends who you know have been just as socially distant as you have been. But, for instance, Klara and I went on a bike ride today, and saw some people having a party where there had to have been at least 50 people there. Only 2 of them were wearing masks. All outdoor of course, but they were very close together. All it takes is for one of those people in that crowd to have covid and everyone else will get it. 

And thats the problem with sending the kids back to school so soon. We live in a society where people have to work. The majority of families have 2 parent working family households and not many of them are able to work from home. So, they rely on school to be childcare, which it definitely IS NOT! And, in many public schools, there are 30 kids to a class, so they are fairly close together. And once winter in Illinois comes, there is no going outside for class, or having windows open. So, I'm not sure how to deal with the ventilation that IDPH recommends then. And, the thing is, covid is not like the flu or a cold. We don't have antivirals for it yet. We don't have a vaccine. So, dosing your child up with ibuprofen and sending them to school, which has been happening apparently, not only is awful for your child because they are going to school not feeling well, but also awful for any immunocompromised child they are sitting next to. You don't know if there is a child that has recently undergone chemo, had a transplant, is on medicine for juvenile rheumatoid arthritis, has diabetes, or asthma. All of which place them at higher risk for serious illness from covid. And believe me, you may not know it, but there is at least one child that has one of those illnesses or another preexisting condition in your child's class, or they may have a special such as art or gym with them. And, even if there isn't, the thing is, kids pass this on to teachers as well. They also can bring it home to parents, grandparents or infant siblings who are also at increased risk for serious disease. It's not just about you when people ask you to wear a mask. And it is such a simple thing to do, it is not invasive like asking you to take medications or put anything in your body. It's a simple mask. Look, if you wear the mask and you're right and it does nothing, worst case, you wore a mask for no reason. But, If I am right, then the best case is, you saved another persons life by not spreading covid. Now, isn't that something we should all want to do!

I want to keep these kiddos around for a very long time! 

 

An impossible decision

I'm trying to put in to words here how I am feeling about school, how I am feeling about the kids going back to school, back to being with their friends. Me going back to face to face EI. And all i can come up with is it's an impossible decision. I have been overthinking this for months now. Really, since they got "out of school" in May. I have been thinking of what to do since then. I go back and forth thinking about what the "right" decision is. And I have come to the conclusion that every decision is wrong, so I just have to pick the best wrong. I've tried asking our transplant team, and while they are great, they don't want to tell anyone what to do, so they gave general guidelines on what to do for school and said that if owe wanted Ben fully online, they would support us in that decision. I have been weighing pros and cons of each decision I make. None seem right, yet none seem totally wrong. 

Abby did not do well with online learning last year. She could not self-motivate. She is not a self-starter. She needs the motivation of being in a school setting at least a couple of days a week. We can deal with the online stuff the other 3 days. But, what if during those 2 days, she brings something home. We do have rules set up for them to follow when coming home. I bought alcohol wipes for them to wipe down seats. I bought bunches of masks. So you'd think I'd feel ok with it. So, why am I so hesitant to send her back? 

Ben and Klara's school is much smaller and is also willing to do whatever schedule we would like, So, if they go back, it would most likely sign up with Abby's schedule. But, Klara learned well online last year. And, I can teach Ben if I have to. I am a certified teacher of birth-3rd grade. So, in a pinch I could teach him everything he needs to get set for 4th grade. But, he does not learn well with just me teaching him. 

Then I think of the social aspect. They haven't seen anyone since this all started and they need the socialization. But, at the same time, in order to be safe, they will have to have masks on and stay 6 feet apart. What kind of socialization is that? You can't tell your best friend secrets if you're 6 feet apart. You can't have play dates 6 feet apart. You can't really do the things schools do to keep kids engaged from 6 feet apart. So, why do I want them back in school then? I don't know! And it's killing me trying to figure out what to do

I know many of my transplant mom friends, as well as other mom friends are going through the same agony. Do we put them in fully online, or do we do a hybrid? If we do a hybrid, what does that look like for our district? Abby needs to be in school. Joe says he feels like Ben and Klara's school is even safer than Abby's because there are way less kids there to worry about. But, the kids in Abby's school are in junior high, so one would hope that they know to keep there masks on and not try to cough in peoples faces. Abby and Klara's school, Ben is in a class with 6-9 year olds, which, at that age are not really known for their good sanitary practices. Klara is with 9-12 year olds. A little bit better age group, but still a little worrisome. I worry so much over this decision. especially as I see numbers go up in Illinois every day. 

And yet, I also see people nonchalantly roaming around having parties of 50-60 people (yes, I know the maximum has been raised to 50 people, doesn't mean that it's totally safe yet), without masks, closer than 6 feet and not a care in the world. I wish I could feel that free. To not have to worry about my child's health. To not worry about his siblings and the guilt they may feel if they brought something home and made him sick. I can only imagine how guilty they would feel if they were the ones who brought it home and he was in the hospital for a month. 

People are telling me to go with my gut. My gut is pulling me in a million different directions and keeping me up at night! I think I know what I want to do, and then the devil on my shoulder says "are you sure about that, because here is what I think will happen if you do that....."and lists 10 reasons why it's wrong. No matter which scenario.  There is now wrong answer,  but still, there is no right one either. J

Let's get real here

I wanted to take a minute to get real about some stuff. I think everyone needs to understand, not everything on social media is real life. Many times people will post what's really going on, they will post the hard stuff, but a lot of times, people post the images they want you to see. The good stuff, the happy stuff. So it can look like everything is roses. That's not real life. Why am I talking about this? Well, because states are starting to talk about opening up, and what to do for fall. And while you may see some of your friends posting pictures of them doing e-learning with their kids and looking happy and showing you color coded schedules, or pinterest boards with lots of themes on them (heck, I'm one of those people), that may not be all there is to their lives. I posted this picture a few weeks ago of Ben doing some work. He looks so happy, right? And he was! He was doing something he enjoyed doing.

   

What you didn't see were scenes like the ones below, where he decided writing 5 sentences was the end of the world. And why would I be telling you this now? Well, because people may have the assumptions that it is easy. That because I have an education background that I can do my job as a Developmental Therapist, help my son with his e-learning, help keep Abby on track with her e-learning and keep up with the massive amount of emails coming in from all of her teachers (literally, an email from at least one teacher every single day telling me how much work she is missing. I GET IT! I know she is missing work. I can see that in her home access account. I am TRYING), as well as live daily life. It's not. It's not easy for any of us. People don't always see the real life. They don't see the massive amounts of laundry in the background. They don't see the mom having to get on her daughter to do her work every 10 minutes because she has ADHD. They don't see the 8 year old who is having trouble writing and is just DONE! They don't see the anxiety, the fear, the chaos. Does that mean I want us to go back to normal life? No. There is no normal anymore. Does that mean I think we should live in our houses forever, never seeing anyone ever again? Good lord no! People need people. BUT, I am not ready to send my kids out in to a petri dish (school) when they are finding that kids are getting an inflammatory response similar to Kawaskai disease from Covid. If I could be assured that all kids would stay 6 feet apart from each other, not touch each other, keep masks on all day long, wash hands every hour, and never share any supplies, maybe I'd feel better about it. But, having taught in public schools, and having taught younger children, I know that is just not possible. So, what do we do? Well, yesterday we had 192 deaths in Illinois from Covid, so I am not ready to open up the  state. Even if they said everything is open up today, I for one would not be going out of my house. It is just too dangerous for my kid and kids like him. I am in favor or the governors phased re-opening. It is based on science and seems very reasonable. I do not think we should let politics come in to play here. I do not think that we should ever be basing this on republican versus democrat. This should always be based on what the science tells us. 

And yes, I am still trying to figure out what to do for the fall. I don't even know yet. I will have a 3rd grader, 6th grader and 8th grader. All 3 are excited about graduating. Ben would be graduating from E1 to E2. Klara would be graduating out of Montessori. Abby would be graduating to high school. I HATE thinking about taking that away from them. Like it really kills me inside. BUT, I will not risk any of their lives for graduation. I can't. And that's what it comes down to. Their lives. Even if I only homeschooled Ben and kept him home because he is the transplant kid, if Abby and Klara go to school, they could be asymptomatic carriers and bring something back and that could end up killing him. So whatever we decide to do, we will be doing for all 3 kids. And I really hope I am not the one that has to decide it. I was so glad when the governor decided to end school for the year and I didn't have to be the bad guy telling the kids they were not going back. Because if he hadn't said it, I would have. They were not going back this school year no matter what. But in the end, our governor made the right choice and ended school for the 19/20 school year. 

But, this is literally life for us. We are used to sanitizing every little thing. We are used to having to quarantine. While other people are sitting there saying "My rights! My freedoms!" This is what we do to keep our kids safe. We sanitize, we clean, we keep hand sanitizer in our cars, nurses and kids book bags. Some of us already had cloth masks on hand before the pandemic hit. We have gloves. We are used to wiping things down. We are used to having to stay away from sick people and being wary about the person that just coughed or sneezed (and maybe giving them a stink eye).  We have to be cautious. Our kids lives depend on it. So when  I say it's really hard for me to decide what to do next year. I mean it. IT IS HARD! This is not easy or anyone! 

And, just for good measure, Ben has a stomach ache today that has been bothering him all day. Could it be just a regular stomach ache? Sure. Could it also be covid? I mean, thats always in the back of my mind. That's what anxiety and overthinking do to you. That's why it's almost impossible for me to see myself sending the kids back to school unless our cases have severely dropped by August. Of course, anything can happen. It is possible that our cases will significantly drop and there will be so few deaths that I will feel ok with it. I can always hope! 

Just to show anyone can make anything look good

Back to school

Ok, I'm gonna get on my teacher soapbox here a little bit. I respect the AAP. I really do. And I know, they are trying to keep kids safe and doing the best they can with their recommendations for how to help kids go back to school with what is a crazy situation. BUT, these recommendations https://edition.cnn.com/2020/05/05/health/schools-reopen-coronavirus-pediatrics-wellness/?fbclid=IwAR1f2X54ACzjivBYq7532iIcaoRV6sqJxr0RP5frGUF8bkoayj5uPcqJG7k 
https://services.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/covid-19-planning-considerations-return-to-in-person-education-in-schools/ are only realistic if you already have a very small classroom with lots of aides in the classroom. This is not going to work at all for public schools. Unless they are proposing that we add more classrooms so there are less kids in each class, which I am ALL FOR! And, I think my teacher friends would be all for. I do appreciate, though, that they said that we could start with reduced hours, and there might be a possibility of closures again if the virus returns. Though, that could be hard for dual income households, as it is now.

In Illinois we are doing phases of when things can start to open up. Right now we are in phase 2 which means things are pretty much still closed, you can order food and groceries, go to the pharmacy, go outside for walks, order things for curbside pickup. Stage 3 relaxes a little more where you can be in groups of 10 or less, hair salons and barbers open. Stage 4, groups of 50 or less can be together, schools and daycare can open under IDPH guidance. But in all of these stages, social distancing and wearing a mask is the norm. Stage 5 means we have a vaccine or cure. And life can go back to a new normal. Now, I am not exactly sure how schools can open up if you can have only groups of 50 or less, but, I guess we will figure that out when we get to stage 4. Right now we are just hoping to get to stage 3, which I am not sure if we will get there in June because our cases and deaths keep climbing instead of decreasing or staying the same. Which brings me to my questions of how this would work in schools. How do you socially distance kids in schools? How do you keep them safe, make sure that everyone maintains distance, as well as are we requiring kids to wear masks in school? Will the teachers? Thats going to make it awfully hard for kids who are hard of hearing to read lips. Or kids who are working on speech.

In Klara's class she has 5 students right now. In Ben's, I think he has around 14. I could be wrong about that number. And some will graduate up to Klara's class next year. So, in a school like that where class sizes are smaller, this would probably work well (maybe not for toddlers who like to stick everything in their mouths, but probably the rest of the school). But, I would still worry about bringing Ben back to school if the number of cases are increasing. It is not known for sure yet how transplant children fair with this virus, but Ben has another strike against him, he also has asthma. So, this would be even harder on his body.

Right now, in most of Abby's classes she has at least 32 kids. There is no way to keep them socially distant. I have seen some of her classrooms, they are not big enough to keep them 6 feet apart. And they do a lot of flexible seating in all 3 of my kids schools, so that would make things even more difficult. Also in lower grades, kids don't even know the meaning of not touching each other.I taught grades pre-k-first grade before becoming a DT. I know how much kids are all over each other! I do agree that children should keep up with their physicals and vaccines now more than ever! The last thing you need is to have your child get measles or chicken pox while worrying about covid!

And look, I DO want to send the kids back to school! I want them to be with their teachers, their friends, everyone. Learning in a classroom. But not if it's not safe and done right. Especially not with Ben. And if it's not safe for Ben, then that means Abby and Klara can't go back either because they could bring something back to him without even knowing.
Again, I do appreciate that this is a difficult situation, and the AAP is trying to give out some guidance on how to deal with this. I appreciate that they are doing the best they can to keep our kids as safe and healthy as possible in an unprecedented time.

*off my soapbox now*

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