Emmy turned 9 years old on July 2! Charlotte is 11, and Theo is 6. For those of you that have been following this blog from the beginning, do you feel old now?? Haha. When I started this blog, Charlotte was 3!
Emmy’s kidney surgery went well. Thank you for all of the support! I was terrified for the surgery, but everything went smoothly. One of her kidneys had an obstruction so, even though the doctor was able to fix the obstruction, the kidney will probably only function at 17% from this point on. Her other kidney appears to still be functioning at 100%, which is great.
COVID-19 has been tough, of course. It’s tough on everyone. We actually got very, very sick in March. Everyone in my house got sick, but Emmy and I had it the worst. We both ended up in the Emergency Room with pneumonia, and it was right at the start of COVID-19 hitting my state very hard, so we were sure that’s what it was. I was tested twice with the nasal swab, and both tests were negative. Emmy was also tested, and she was negative. We also negative for the flu. The doctors ran the full respiratory panel on Emmy and I, and the only thing that popped was “mycoplasma pneumonia,” which is a bacterial pneumonia and is also known as “walking pneumonia.” However, it’s known as walking pneumonia because you can walk around with it and not know that you have it. Ummm…there was no casual walking for either of us, and we DEFINITELY knew we were sick. No doubt about that! Half of the doctors I saw thought it was actually COVID-19 and that the tests were wrong, and the other half of the doctors thought it was “just” walking pneumonia.
I got the COVID-19 antibody test and that, too, was negative. So the data tells me that I didn’t have COVID-19. But I’m suspicious of the tests because I truly had all of the symptoms including loss of taste and smell, fevers of 103.9 degrees, chills that shook my whole body, night sweats that drenched the mattress and my clothes in sweat, and a wicked dry cough.
If I DIDN’T have COVID-19, I certainly don’t want it because good ol’ walking pneumonia was absolutely brutal!
One thing that has been very eerie for me during this time is to read and hear about people with COVID-19 who are put on ECMO. To treat people who are having trouble breathing, doctors are trying to move away from ventilators and lean more towards ECMO in the Intensive Care Units.
ECMO is a word that I had never heard before May of 2013 when Emmy was put on it. Emmy had heart surgery in May of 2013, and she went into cardiac arrest twice after the surgery when she was in the recovery room. She was in such bad shape that she had to be put on the life support machine, ECMO. (I kept thinking that they were saying “Elmo” at the time because Emmy was really into Sesame Street and Elmo.) They had to paralyze her body and then put tubes in her that circulated other people’s blood throughout her body to keep her alive. (To anyone who donates blood — THANK YOU! THANK YOU! THANK YOU!) Emmy was on ECMO for about a week, and we didn’t know if she would live or die. It was truly the worst time of my life, and we’ve been through some pretty crappy times. Amazingly, she survived. But I have PTSD.
Now when I see or hear the word ECMO (and it’s been coming up a lot lately with COVID-19), I’m instantly transported back to that hospital room watching my toddler paralyzed on a bed hooked up to a machine that kept her alive.
I’m reminded of all of this during the fights about mask wearing and whether or not we should take this pandemic seriously. Back in March, I read an article by Micah Lynnes, a woman who I believe lives in Canada and wrote about her medically fragile daughter at the start of the COVID-19 outbreak. She wrote, “When you say ‘only the vulnerable are at risk,’ know that your ‘only’ is my everything.”
That quote really hits home. Emmy is vulnerable, and even I am vulnerable. Two years ago, I had breast cancer followed by a full year of chemo, and my white blood cell count is still very low. My body hasn’t recovered yet from chemo, and now my oncologist has scheduled a bone marrow aspirate and biopsy to find out why my white blood cells haven’t rebounded. So, indeed, both Emmy and I are vulnerable. But the bad stuff doesn’t just happen to people who are medically fragile. Just read about healthy, 41 year old, Broadway star Nick Cordero with no pre-existing conditions who tragically lost his life to COVID-19.
I think the path to getting back to normal life involves everyone wearing masks. Right now, with some wearing masks and many people not, the virus is spiraling out of control. If we can join together and agree that there *is* a way out of this, and it involves everyone doing his/her part, I think we’ll be in a much better place.
I know that we’re all anxious for schools to open…but can I really send Emmy back if we don’t get this virus under control? She’s vulnerable, and she can bring it home to me, who is also vulnerable. And if I can’t send her back, I certainly can’t send Charlotte or Theo, who could just as easily get it and pass it to us.
But I WANT to send them all back to school for their social and emotional well-being. I think about the moms that I know who are teachers and *also* have medically fragile children. How are they balancing all of this?
So we’re at an impasse, as I feel a September start date for school breathing down my neck…
As I see it, wearing a mask is a sign of respect. You’re kindly and respectfully protecting others from your droplets (read: germs). Just as I wear a mask to protect you from my droplets, you do the same for me. We can do it for our friends, and we can even do it for strangers because you never know who might be medically vulnerable. Looking at Emmy and I, you would NEVER know that we might get sicker than others if we were to get COVID-19. However, even though my hair is all grown back from chemo and I appear to be a very healthy 41 year old, my bone marrow may be permanently damaged, which affects my white blood cell count and makes me more prone to viral and bacterial infections.
I went to a Farmers’ Market today, which was lovely! It was so nice to get out! About 95% of people were wearing masks. Only 5% were not. I have to say that I did look sideways at the non-mask wearers. I thought, “Wait a second…we’re all protecting you from OUR germs. Why aren’t you protecting us from yours?!?”
Some people have said that they don’t worry about getting COVID-19 because they don’t have pre-existing conditions and can fight it off like a champ…therefore they don’t wear masks. But I’m not asking you to wear a mask because of your body’s response to COVID-19. I’m asking you to wear a mask as a sign of respect for your fellow humans. You’re protecting us from your germs, and we’re protecting you from ours. It goes both ways, and it’s respectful — plain and simple.
We don’t know who has pre-existing conditions as we walk around in the world, but we do know that 40% of people may be asymptomatic carriers of COVID-19. Can you imagine unknowingly infecting someone else, especially someone who is medically fragile?
As the article by Micah Lynnes says, “Your ‘only’ is my everything.”