Sunday, May 16, 2021

Reflections from the other side of COVID

3 out of the 4 of us are officially considered over COVID and free to move about the country at this point. 

Unfortunately, Dusk joined the COVID party with symptoms and a positive diagnosis about a week after us, so he's still in the thick of it. Thankfully, he seems to be managing ok from a respiratory perspective, just generally really fatigued and winded. Like me, he gets it in spurts. But we're ever so grateful he's doing as well as he is, and was even perky enough to celebrate his birthday last night.
Not the birthday any of us envision for him, but we're so grateful to have him recovering and able to remain at home!

Bodie and Sierra seem past their symptoms at this point, other than an errant cough (Bodie) or muscle ache (Sierra). But overall, doing really well. I'm struggling a bit more than they are, still battling with my friends the cold sweats, windedness and fatigue. I gather those new friends may hang around for awhile, but they do seem to be getting better each day, so I hope they won't stick around for too long.

So, now that 3 out of the 4 of us are on the other side, I do have a few thoughts about COVID I'd like to sure.

First, COVID is real. It's not a hoax. It's not a made up political lie just to get us all under government control and vaccinated. And it's not "just a cold." We got very lucky that our symptoms were mild compared to many. But our symptoms were definitely significant and very very weird. 

We tend not to catch too much around here, and I am typically not down for more than a day when I do get sick. But this thing knocked the kids and I on our butts for almost a week straight. As in, I'm pretty sure we binge watched Netflix. Like, all of Netflix. We really didn't have energy to do much else. I didn't cook for probably a week, because none of us really felt like eating. I haven't had mono before, but I'd say the symptoms are similar to what I understand mono to feel like, just over a much abbreviated time period, obviously.

Second, the symptoms are weird and it seems to hit everyone differently. For us....

BODIE had 2 days of unrelenting, rolling on the floor, nothing could touch them, headaches. He does get migraines, so perhaps he was more prone to them (although he did say these headaches were far worse than his migraines)? My understanding is that headaches are much more common in kids in the early stages of COVID, and the speculation is that it is an effect of the virus crossing the blood brain barrier (isn't that a fun visual?). The headaches were then followed by 2 days of his sense of smell and taste being severely affected. He never lost it entirely, but everything "tasted and smelled like vomit," so getting him to eat or drink anything was near impossible. When he did eat, he would almost immediately throw up. By the 2nd day, he was throwing up despite not putting anything into his stomach. He woke up that day with huge dark circles under his eyes, a heart rate in the 160s and extremely lethargic. He was begging us to take him to the hospital so he could get fluids through an iv. It was the most frightened I was the entire time. We touched base with his team and got a Zofran prescription called in. Later that day, he started to turn the corner, eating and drinking a little. The next day, my best friends dropped off a huge selection of his favorite foods (Mexican, Panda Express and pizza!) and that turned the corner for him, thankfully! We got fluids and food back in him and he was feeling better. His sense of smell was off for a few more days, but seems ok now. Throughout the entire 10 days, he had periodic coughing (kept at bay with his inhaler, for the most part), some nasal congestion and a little shortness of breath. He never had a fever.

SIERRA had a couple of days of a fever in the 101 range right at the beginning, severe muscle aches and a horrible sore throat. Once that broke, she felt better, but had on and off muscle aches, congestion, sore throat and shortness of breath. She also lost her sense of smell, but it's back now thankfully.

AMY. I never had a fever, but had muscle aches for the first day or so. I did lose my sense of smell (it's back, but not completely - I have to try really hard to smell things), had some pretty bad nasal congestion and coughing on and off. My biggest issue was (and continues to be) shortness of breath, fatigue and random cold sweats. I would be sitting on the couch and think "I'm going to clean up the living room! We've been sitting on the couch for 2 days straight and our living room looks like a frat house. This is ridiculous!" So I'd stand up, pick something up off the floor and throw it in the trash. And I'd be panting like I had just run a mile - and I'd be super sweaty. Essentially, my body would say "Nah, I think we're just gonna right back down and watch some more Netflix." So I did. The windedness and sweating seems less frequent now, but it's still there from time to time. And comes on unexpedtedly, which is always fun. And the fatigue is getting better, but definitely still there - and catches me by surprise every time. Apparently, I'm not Superwoman after all.

DUSK's symptoms haven't resolved completely yet, but seem to be similar to mine, although less fatigued.

Battling COVID with two medically fragile family members isn't for the faint of heart, no pun intended. It was scary, in large part due to the weirdness of this virus, whose symptoms ebb and flow. It's sort of a whole new day every day with COVID, a Russian Roulette board where you might wake up with an entirely new symptom, no symptoms at all, or need to be hospitalized. The worry of not knowing which one you'll end up with ups the ante considerably.

On the whole, I consider us to be incredibly lucky our symptoms weren't worse. We have been told we should have at least 3 months natural immunity now, maybe more. We don't know our next steps yet, only that we're holding off on any vaccinations for a bit. Apparently, side effects from the vaccines are considerably higher if you either have covid or have recently recovered from it, so we're holding off for now. I know my doctor wants antibody tests done first on me before we make decisions on me, and we will rely on the medical advice of Dusk and Bodie's teams for them as well. But in the meantime, we can apparently run around and hug everyone for the next 3 months without fear of risking them or us! 

We're so grateful for the friends who came alongside us while we had COVID (well, not literally - but who dropped food off, who ran errands, who sent us surprises and meals) - you lifted our spirits in ways we cannot fully express. Please just know how grateful we are.

And THANK YOU for praying for us. We know that is why our family has handled, and continues to handle, this pandemic so well. Please continue to pray that Dusk's symptoms remain manageable, so he can join us in hugging the world soon!

Sunday, May 9, 2021

Motherhood in the time of covid

Mother's Day this year has been...different.

Sierra, Bodie and I were all diagnosed with symptomatic COVID on Friday. We know where we got it. It's a long story, but let's just preface this by saying that we have been very careful with masks and social distancing. With two medically fragile peeps in the house, we take COVID very seriously around here. We are definitely not of the "it's just a cold" or "it's a hoax" camp. Sorry, not sorry for that. But the one thing we have learned in raising a medically fragile child is that all the worry has to be balanced with LIVING your life. We let our guard down a bit...and we ended up with COVID.

Thankfully, Dusk and I both have our first vaccine under our belts (our second shot was scheduled for this week, actually). That has probably helped my symptoms to be more mild. And Dusk tested negative and has had no symptoms, thank God. We're ever prayerful he remains that way.

Bodie, Sierra and I are all symptomatic. 

I tell ya, this disease is a weird one. 

Sierra was the first to come down with her symptoms, and is almost a week in at this point. She seems past the worst of her symptoms, which included one day of a 101 fever and really bad muscle aches. She has lost her taste and sense of smell and generally is just really tired. Although her fever is gone, she is suffering from a lot of what she calls "heat waves" when she just gets really hot suddenly. 

Bodie was second to become symptomatic, and is faring ok so far. He suffered through two days of unrelenting, sobbing on the floor, massive, absolutely untouchable by any home remedy or medicine, headaches. (I have since learned that headaches are a common early COVID symptom in kids, even more so than fevers.) His headaches have passed, thankfully, but his sense of smell and taste has been affected today so much that "everything tastes and smells like vomit." It's been difficult to get him to eat anything. We know the key to keeping him healthy enough to fight this virus at home (and not have to go to the hospital) is to keep him well fed and hydrated, so please pray this symptom passes quickly for him. Thankfully, his lungs seem clear so far and he's been fever free. He does have congestion and coughing, but it hasn't moved into his chest yet.

I was the last to become symptomatic and am now only on day 4. I haven't had a fever yet, but am a bit congested. My biggest symptom by far is the shortness of breath and it's NO JOKE. I'm fine as long as I'm sitting down. But once I stand up to start moving around, I can't make it more than 15 minutes before I'm out of breath and needing to rest. I literally broke into a sweat changing the sheets on the bed today. And my body is definitely struggling to maintain temperature - my overall temp is low, but I'm sweating a lot and going from hot to cold and back. My oxygen sats are ok - it's just that I'm constantly out of breath. I feel like a contestant on The Biggest Loser, at the beginning of the show, when they can't walk more than 15 feet without getting out of the breath. 

It's been super fun.

We've gotten good advice on the best regimen of vitamins and supplements to take at home in addition to the essential oils we're already using, and we're on that. 

Our challenge as a family has been figuring out how to isolate Dusk from the rest of us so that he doesn't also catch it. Thankfully, our property is big enough that we've been able to do that thus far. But we really miss him. :-( We're ever so grateful that he can pick up groceries for us right now, since we're persona non grata pretty much everywhere. 

We covet your prayers right now. 

COVID is really like a game of Russian Roulette. 
It can turn at any time. 
I know many people experience mild symptoms, but there are many that don't and we are painfully aware of that. The worship pastor at our church, a healthy guy with no comorbidities, is back in the hospital battling complications from covid again, and has been fighting it since December. We KNOW how serious this disease is and we'd be lying if we said we weren't concerned.
But we know we worship a God who has foreseen all of this and has his ever protective hand on us.  

PLEASE pray for and with our family. 
Pray that our symptoms don't become worse.
Pray that Bodie can continue to manage his symptoms at home.
Pray that Dusk doesn't get it.
Pray for God's hand of healing and protection over our family, especially over Dusk and Bodie. 

So this Mother's Day looked a little different today. 
It involved a lot of resting, and a socially distanced dinner outside so we could be with Dusk. 
But at least we are together. 
I got to talk to my incredible, amazing role model mom multiple times today.
And I have my babies in my arms, covid positive and all, but they're with me.
And for this, I know I am the lucky one.

Tuesday, February 16, 2021

Does this shirt make me look eleven?

"Mama, I know your 10th birthday is a big deal, because you're double digits. And 13 is a big deal because you're a teenager. But 11 isn't really a big deal, right?"
Oh my sweet boy.
You will never have a birthday that's not a big deal.
You will always be our miracle.
You don't get to take birthdays for granted. 
Sorry not sorry, kiddo.

(Bodie even helped make his cake this year!)

COVID might have made it a little harder to celebrate like we'd have wanted, but we made it work. 

Bodie has recently developed a really sweet tight knit group of local boys his age who are also homeschooled.  It's all outside these days (thanks to COVID), and they're all country boys, so it's a little bit Lord of the Flies, but it's so awesome. 

We invited them over yesterday and had an epic Nerf battle party 
We were able to keep everyone outside and (mostly) with their masks on - Nerf protective gear for the win! 
Even the big sisters got in on the action.

The smile on his face says it all (well, it says he needs to pull his mask back up, but it also shows his sheer happiness). 

Sierra made a pretty epic fruit and veggie platter.

Birthday candles, COVID style. 
Ain't no way we were letting this kid blow out candles on a cake that was about to be eaten by others. Ha!

Last night, Bodie said to me "Mom, I know I say this every year, but that was seriously the best birthday party I've ever had."
I couldn't agree more.
Getting to watch him run around for 2 hours with the sweetest group of boys who love him as much as we do, and hearing him laughing hysterically...that was truly the best birthday gift I could have imagined for him. 

Our kiddo has found his tribe. 
A bunch of Lego building, Nerf gun shooting, "let's make our own tribe" boys. 
And we are profoundly grateful. 

So yes.
10 is a big deal because you're in double digits.
And 13 is a big deal because you're officially a teenager.
But when you're 11 and -
you've had 6 heart surgeries
and 5 heart catheterizations
and countless blood draws, x-rays and other procedures
and spent far too many nights in the hospital - 
11 is a big deal.
A very very big deal.

Happy Birthday to the bravest kid we know. 
We could not possibly love you more.


Saturday, January 9, 2021

Hey, remember us?

I can't believe it's been almost a year since I've updated the blog!!! Suffice it to say, COVID has us all sorts of disorganized and upside down over here. Thankfully, we've all remained healthy, but let's just say the jury is still out on whether the Bennett four actually enjoy one another's company enough to be together quite this much...

The good news is that this little dude is doing GREAT. 

Since the spring, he's been seen by his team at CHLA twice and his team at Stanford once. Our last appointment with CHLA was just last week, and both teams are really happy with how well his heart is holding up. His function continues to be depressed, but only mildly so (quite an improvement from when he first went into heart failure, to be sure!). His BNP (measure of heart inflammation) continues to be low, and he's riding his pacemaker 90% of the the time (which is music to our ears - when he's not riding his pacemaker, he's in funky rhythms, so we want him riding that thing as much as possible!).

He sees his CHLA team every 6 months, and his Stanford team annually. We're grateful to be in this time of stability and are grateful for every day Bodie gets to remain this stable - we're hoping for a long time in this stage!

It's hard to believe we've been at this heart failure dance for 4 years now. The picture on the left was taken the day he was initially diagnosed with heart failure; the pic on the right, with the same Vader, was taken last week. 
Can I call it a dance? Man, if it's a dance, it's like the horrible awkward Junior High dance that no one actually wants to go to. 

But I digress. He's doing great. 
He's loving horseback riding, taking weekly lessons. He's even been kind enough to allow me to join him on trail rides this year, and I'm loving our time together. 

And this girl is doing great, too! 
She's growing like a weed - although I still have a couple inches on her (I think!), I'm getting pretty uncomfortable with the fact that she's looking me right in the eye these days! She just donated her hair again (for the 3rd time!), and continues to impress us all with her beautiful singing voice (definitely inherited Dusk's musical talent). 

We continue to be so grateful for your support and prayers for Bodie!!!!