Hi. I can't believe I'm going to do this. But, I feel like not sharing isn't right, either. So, here goes...
This is our experience with Covid. I know it might not match someone else's experience with Covid. And I can't help if our experience is different, better, worse, etc. That's life, we all live our own experiences, and from that come our own unique perspectives and opinions.
Early December
Right after Thanksgiving, one of Harlie's nurses found out that she was exposed to a positive Covid relative days prior. As soon as she was notified, she went for a test and she was positive, too. She had worked in our home with Harlie for two days - during her contagious time. My whole family went on quarantine.
So, just to go back for a sec... Since Harlie came along, we have tried to avoid her exposure to things that can make her sick. We were washing our hands before instructions got plastered by every sink. Thanksgiving 2019, when she got sick and was in the PICU for two weeks, we didn't ask where she got parainfluenza, or who gave it to her. No one was wearing masks (or apparently, washing their hands) and no one really cared what could happen if they sent their child to school sick. Heck, even adults have felt like they couldn't miss work if they were sick. Trust me, no one wants what you have - stay home if you're sick. This was true for 13 years - prior to Covid. We have done what we've had to do to keep Harlie safe and happy. We had to stop sending her to school because we couldn't risk anymore sickness. We didn't ask the school to make it safer for her. And we have had to think about her happiness while keeping her safe. You can't pick one. You have to do both. Well, we want to do both, so we do - successfully, in my opinion. The general public/government has picked one and made that the number one priority, and the same level of concern for everyone. As you can probably tell, we don't agree with that way of life. We have managed to make it work. We know it can be done. And that's with a medically fragile person in our home.
Anyway, after the exposure we tried to avoid finally happened (it was inevitable) I had a virtual meeting with her pulmonologist. He went over a plan of action should Harlie start to show any symptoms. He said that we just don't know what it could do to her. She has three lung lobes instead of five. And those three aren't the healthiest of lungs. She has heart disease. She has a compromised airway. Who knows what this could do to her? But, he also told me that none of his patients (all with lung issues, obviously) have gotten Covid. They have had other viruses, but not that one. I found that comforting. He also gave me statistics for kids under the age of 18. And since Harlie, I have become a numbers/odds person. If you look at the numbers/odds - kids are SAFE from Covid. Period. There are FAR more threatening issues to that age group. The average 15 year old should not be fearful of dying from Covid. And if they feel that way, society has made a huge mistake.
Our plan was to take her straight to the emergency department so they could take an xray of her lungs and assess where she was and how we could support her. He said he didn't want to get behind in her care, should she get it.
Maggie's (my niece) wedding was the following weekend and both Harlie and I were bridesmaids in her wedding. We couldn't go. It was heartbreaking. We are all very close and it felt so wrong to not be able to share this moment with them and my entire family. They live streamed it and we all watched from our couch. I cried the whole time. We all love Maggie and AB. And we are a family who loves a party! Missing their wedding was a true loss.
They were so sweet to come over that night for a socially distanced visit/beers in our driveway. Harlie and I put on our bridesmaides dresses and Tom put on his own hand crafted haz mat suit so he could hug them for us.
Well, we didn't get it. We all tested negative and we were free after our two-week quarantine. Side note - we have such awesome people in our lives and we had friends go to the store for us and even go pick out and bring us our Christmas tree! How amazing is that?! Love them!
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| Thanks, Geoff and Bethany! |
Christmas
My birthday is on Christmas Day. As you can guess, it is a crazy day and it is not about me. It is hard to compete with Jesus and Santa. Haha! So, a few years ago we started celebrating it on Christmas Eve with a few friends and family. This year had to be different, of course. So, we had a much smaller group this time. And they were all people that were already in our bubble.
However, one of our friends in attendance ended up testing positive a few days after. The day we learned of his positive test, we had gone to the Blue Ridge Tunnel with the kids and friends. We rode in the car together, we ate lunch together. Heck, some of us even tried each other's beers!
The next day, when Tom woke up, he felt a little off. Since he had learned about our friend's positive test the night before, he went that morning to get a test. He was positive. Ugh. So, he came home and went straight to our bedroom to quarantine. I kicked Murphy out of his room and sent him to the 3rd floor so I could stay in his room. And Tom stayed away from Harlie (which meant I had to do all of her care) and wore his mask when he was out of our bedroom. Tom cannot sit in one room for days at a time - and keep his sanity. So, we took lots of walks outside.
After a while, it was clear that no one exposed to Tom got Covid, so that was good. Even after a car ride for several hours AND sharing beers. Once his quarantine was over, we went to dinner with Mike and Marcy and some friends for Marcy's 50th birthday. The next night, we went to Geoff and Bethany's house for Bethany's birthday. We played games and yelled and laughed out loud and had a great time. Also, side note, Mike and Marcy were with us that night, too. At the end of that night, I felt really tired. Like more tired than usual. This really could've been explained by the two weeks of constant interrupted sleep (I had to do all the wake ups for Harlie during the nights since Tom wasn't allowed near her). The next morning, I took a test. That was a Sunday.
The next morning (Monday), Harlie woke up and said she was tired. Uh oh. She spiked a fever and stayed that way all day. I spoke with her pediatrican and she told me to take her to the ED. Unless I'm truly worried about Harlie, or I have exhausted all I can do for her at home, I do not take her to the ED. And I argued my case.
Funny side note, I had to argue first with a nurse that was new to the practice. So, she didn't know us or our situation. You should have heard/felt her reaction when I said I didn't want to take her to the ED. (Yes, I know we had a "plan" but, she didn't require anything I couldn't provide, so I wanted to change the plan. Understandable, right? Haha!) She has probably never heard a parent say that. I debated for a bit (till she was speechless) and then said, just talk to her doctor, she will understand. And then the doctor called me. Haha! Luckily, she does know us very well and understands me. Edited to clarify that this was not an argument - it was a conversation and me and this nurse are totally cool. 😊 In then end, I always want to do what is best for Harlie and since no one knew what Covid could do to her, I had no choice. I packed an overnight bag (this usually insures that I do not have to stay) for the both of us, put oxygen in the car and took her.
They swabbed her, did a full respiratory panel, took chest x-rays, and did some blood work. A little while later, the doc said they looked like Covid lungs. Ugh. A few hours later, they came to tell me that she was Covid positive. Clearly, I was not surprised.
I found her x-rays really interesting because usually, chest x-rays lag behind the patient's symptoms. However, in this case, they are ahead. She wasn't presenting with any kind of respiratory issues (no increased oxygen need, no increased work of breathing, etc.). All she had was a fever. So weird. But, so good for me to know and keep in mind going forward here. What this tells me is that if she starts to go downhill, her lungs are even worse than her symptoms, so we have less time to react and get her support from the hospital.
She was fine, really. Her fever came down with meds, her sats were fine on room air, and she didn't have any increased work of breathing. So, I said I wanted to take her home and assured them that I would bring her back if she worsened. They agreed and let us go. Honestly, I found their whole demeanor to be comforting. They didn't freak out. They didn't care for her any differently (and trust me, I've seen enough ED care to know that it was the exact same - with or without Covid). And they totally valued my opinion and said it was up to me. Love it.
The next morning, Harlie woke up and said she felt better, got herself dressed and ready for school, and had a great day! She hasn't had a fever since Monday and today is Friday. All of her numbers have been great and she is happy to participate in her schooling.
Covid has not been as kind to me. I learned I was positive the day after I took Harlie to the hospital. I have felt like crap since. I just feel like I have a really bad head cold with headaches and pressure in/around my ears and jaw. Lots of fatigue. Other than that, I'm great. Haha!
So, we are on our third quarantine since Thanksgiving. And this is no way to live. The challenges that have developed due to being isolated are far worse than Covid was. At least for us (maybe one day I'll have the courage to blog about some of those challenges/consequences that we are still trying to solve - months later).
I started this writing a while ago. We are now on Day 13 (me) and Day 12 (Harlie) since our first symptoms. According to current info - Days 6/7 are usually the worst. So, I feel confident that we can now celebrate that Harlie told Covid-19 to shove it. Haha!
This is a HUGE relief and life changing for us. We are free from the fear of the unknown! Once Harlie got it, we took no precautions in our home and lived life as normal (while confined to our home, of course). The boys are healthy, and we thought if they got it, too, then they would be done with quaratines, too. So, we wanted them to get it - just so all of us could be done and free. Not to mention that if you test positive, you are free sooner than if you test negative after exposure.
However, they tested negative! Ugh! We have not worn masks, we have eaten many meals next to each other, we have played cards and yelled and laughed heartedly in close proximity. We even hugged! I don't know how they haven't gotten it! This just shows that it isn't as easy to catch as some might think. Or maybe it is harder for kids to get. I don't know. When I told Murphy he tested negative he yelled, "How is this thing even spread?!" Haha!
I would like to think that our experience could bring comfort to healthy kids and adults. I mean, Harlie is 14, has heart and lung disease and a compromised, open airway. Yet, she had ONE bad day (and it wasn't even bad by her definition) and has been great ever since. Also, just to let any worried readers out there know - Tom only gave Covid to me and I only gave it to Harlie (or he gave it to both of us, doesn't matter). That's it. That's where it ended. Despite the birthday dinners where I sat next to others, gave hugs and laughed out loud!
So, please, for the love, you don't have to wear your mask when you are all alone - or when you pass someone outside. Can we just stop some of the maddness?
I feel like I could teach a class on risk assessment. For example, I saw a family in a park, outside, riding bikes - not wearing helmets, but wearing face masks. For real. Just in case I need to explain this - their risk to their health from a head injury is WAY higher/worse than the risk of getting and then having consequences from Covid. This is coming from the mom of a kid who got a skull fracture and brain bleed from running and falling. Imagine how much worse that would've been if he had been on a bike! And, for real, I see kids/parents on their bikes all the damn time without helmets. I just don't get it.
My perspective on life and death is very different than typical. I'm here to tell you that bad shit happens. It just does. For no "good" reason. To people who don't deserve it. That's it. That is never going to change. That is life. That is why I just live my life as thankful as possible. I'm reminded of the movie Finding Nemo. When Marlin tells Dori that he promised Nemo that he would never let anything happen to him. And then she said, "But then nothing would ever happen to him." There's a vast difference between living and existing. And we like to live. Harlie is proof of that. She is happy because she gets to live her life to the fullest possible.
March 6
Wow. I started this post two months ago...
Since then, we are all great, for the most part. Harlie's cardiologist wanted to see her and just check out her heart since she had Covid. I don't think any of his other patients have had it. She had an EKG, an Echo and all is well! He looked at her x-ray from January and he compared it to her prior ones and he said in his opinion, it wasn't much different at all. So, that's good.
I have some other things I want to tell you about - her braces and the challenge with removing them (oh, nothing is ever straight forward or easy with her). Her next surgery in April (just had her virtual pre-op with her surgeon). I'll do that in the next post. And then I'll start posting again before/during her surgery and recovery.
Also, I recently discovered some (okay, many) comments on my posts that either I never approved or responded to. So, I'm super sorry about that. I will be better about answering questions from here on out.
Okay, that's it for now. As always, thank you for reading! And thank you to all our friends/family who continue to support us - no matter what!
Much love,
Christy xo
