Tuesday, April 5, 2022

Stealing Bodie's Thunder

Bodie is getting his pacemaker replaced next week, and we're all gearing up for surgery. He's had this pacer since his Fontan surgery, so going on 9 years now, and the battery is D.O.N.E. It should be a relatively straighforward procedure and he should go home the same day, but with these cardiac kids, you just never know what to expect. So, like I said, we're all a litte uneasy and focused on his upcoming surgery.

And then, Dusk's cardiac team at UCLA called this morning and asked what he was doing last Friday between 5 and 6pm, because evidently, something had interfered with his pacemaker and it had just stopped for a few seconds. For a dude that relies 100% on his pacemaker, that's not a good scenario. Their suspicion was lead failure. So his team let us know in no uncertain terms that they wanted him at UCLA immediately, and he was not to drive there himself. 

So, Bodie and I packed up the schoolwork we were working on, Dusk packed a bag to stay the night, we found someone to take care of our 8,000 animals, we picked Sierra up from school and we were on our way. We were up at UCLA by around 2:30 and after interrogating his pacemaker and doing a few other tests, they were able to confirm that the lead is not communicating with his pacemaker. And the malfunctioning lead is the sensing lead, the one that tells his ICD to discharge because some big, bad awful thing is happening. His pacemaker needs to be replaced as soon as possible.

His team admitted him and got him on the schedule tomorrow (Wednesday) afternoon at 1pm to replace his pacemaker.

 Talk about stealing Bodie's thunder.

Apparently, Dusk's pacemaker heard Bodie was getting replaced and jumped in with "oooh!!! Ooohhh! Me first!!!" 

So there you have it. 
Unplanned drive to LA. 
Unplanned hospital admission. 
Unplanned surgery.

But I got to say, I'm so proud of the kids and how they just rolled with it. Not one complaint. Dusk's awesome cardiologist (who actually happens to be a pediatric electrophysiologist who also sees adult patients), upon hearing that CHLA won't let Bodie keep his pacemaker when they remove it next week, gave him a sample pacemaker to take home! 
Bodie was over the moon to get it.

I looked over to see Sierra taking a picture of him holding it and then texting her boyfriend's mom, saying that "It's not super major of a surgery. They're just going in through his chest" 
You know, just another Tuesday for the Bennetts.
Clearly, we've done a better job of normalizing all of this than we realized!

So, to recap, crazy day. 
Dusk is in the hospital. 
Kids and I are staying in a hotel tonight and hope to see Dusk tomorrow morning before his surgery.
And the surgery isn't that big a deal because at least it's not open-heart surgery. 
What can I say? Our bar is a pretty high for a surgery to be considered a big deal. :-)

We covet your prayers for an easy and smooth surgery - and that we're all home tomorrow night, safe and sound!
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Thursday, February 17, 2022

Shiny, Happy Birthdays

This brave resilient kiddo turned 12 yesterday.
12!!!
12 years of hopes and dreams and defying expectations. 
We will never stop being amazed at the miracle that is this kid's life. 
We love him more than he will ever know. 

But here's the thing no one tells you about raising a medically fragile child (or maybe they did and I missed that page in the "How to properly raise a child with a rare lifelong disease so that they don't grow up to be a spoiled brat incapable of adult living if they actually get to grow up" handbook)...
milestones are complicated.

Birthdays are a big deal. 
They're a big deal even with healthy kiddos, and even more so with medically fragile kids. They're a reason to celebrate all of the milestones of the past year. And in the case of a medically fragile kiddo, especially one you never dared to hope to dream would see so many birthdays, it's a big big deal. A million reasons to celebrate, to be sure.

But parenting a medically fragile child is a different sort of experience. It requires a lot of very intentional compartmentalizing. It requires taking the biggest fears and concerns, thanking God for taking them, wrapping them up in a box with a pretty bow and shoving that box verrrrrrry far back on the highest closet shelf. And then it requires pretending that box does not exist. Because if you really lived with those fears and uncertainties on a daily basis, it would be paralyzing. It would rob every day of its enjoyment. So you keep that box tightly closed and locked away and try your best to ignore it and live in the here and now.

But when a birthday (or any milestone, for that matter) comes around, you are forced to bring that box down. Because to fully appreciate the beauty of that birthday, the miracle of it, you have to acknowledge what makes it such a miracle. 

And so you hold your breath and you peak into the box, and you see inside that box the worst of your fears. Because that box is swirling with emotions - the PTSD from all the things that did happen, the survivor's guilt for all of the things that could have happened but for reasons you don't understand thankfully didn't, and anticipatory grief for the things that are still to come. It's just...a lot. And, if you're like me, and you're a Cancer, well, you like to hold onto feelings like they're winning lottery tickets. And you're just one hot mess.

Because there's no way to appreciate him turning 12 years old without remembering sending him into open heart surgery at 5 days old, at 2 months old, at 7 months old, at 3 years old, or at 6 years old, each time uncertain whether he'd come back to us...or without remembering the 10 year old roommate he had as a newborn, who suddenly and unexpectedly lost his battle with CHD...or without remembering conversations with doctors about how he likely wouldn't make it to his next surgery, and if he did, he likely wouldn't be strong enough to survive...or ...or...or...the list goes on and on. 

And so, you often find yourself a bit melancholy leading up to birthdays and your eyes filling with tears every time you see your amazing warrior of a son blowing out birthday candles. Not because you don't love him or you're not excited. Because you do and you are. But because there aren't enough words to describe all of the emotions. It's just too much. There's just no space big enough to hold it all. So it stays in the pretty box...most of the time at least. 

Like I said, it's complicated.

So if you see me teary-eyed at a birthday party, or a milestone, give me some grace. There's a lot of complicated stuff going on. 

But know this - we love this kid. 

He's an incredible, funny and resilient human being. One who is going to move mountains. If he can just get out of his own way. ;-) He's a pretty great kid. When he realizes it too, the world will never be the same.

We love you Bodie. Happy 12th Birthday. Here's to many many MANY more!



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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!
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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.
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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.

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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!!!!

Sunday, April 26, 2020

QuaranTEENAGER

In the midst of this nationwide shutdown and sheltering in place, a very sweet girlie officially became a TEENager! 

As hard as it is to believe, this sweet little cherub turned 13 yesterday.

I know, I know - a legit teenager now! Man, does time fly.
And this kid was such a trooper. She was so sad to leave her friends in LA, and took the longest of us to settle down here in San Diego. And once she really started to, and was making friends, Coronavirus happened. So she really got a double whammy in a very short period of time, along with a much anticipated 13th birthday party without any friends. :-(

But we made the most of it, with Bodie and I creating a really fun scavenger hunt with clues she had to decipher that led to a lunch at Sonic (social distancing style):
 A quick trip inside our local Rite Aid (the first time she's seen the inside of a store in almost 6 weeks):
 Visiting with dear friends from outside their fence (it was a birthday surprise for Sierra, but I think it really was balm for all of our weary souls):
 Probably her favorite clue, courtesy of Bodie - having to dive to the bottom of the pool to find a (water proof) bag of M&Ms: 
She had been planning a fun masquerade ball for her birthday. Even though her friends weren't here, she dressed up anyway - because you only turn 13 once, right???
I cannot believe how grown up our sweet girl is (both literally and figuratively - this kiddo is already 5'71/2"!)

She received so many wonderful messages and gifts, but I think it's fair to say her favorite came in the form of a sweet surprise last weekend. On Sunday night, Dusk and I were watching a movie in our living room at around 10pm and he went outside to get something from his studio. He came back in saying "Uhhhh - there was something growling at me outside!!!" So he went to get his paintball gun and went back outside, with me in tow (don't ask why he took the paintball gun, but given that he was facing the growling animal, I wasn't really in a position to argue!).

He sprayed into the bushes (well, the paintball gun malfunctioned, so he just shot C02 into the bushes, but it was loud enough to scare off whatever had been growling). But we heard some sweet little mewing - and found this little angel hiding in the middle of a bush. 
 
We brought her inside and realized very quickly that while she may have been wild, she definitely wasn't feral. She ate from us, let us hold her and was purring by bedtime. 

Some asking around to make sure she didn't belong to anyone and a vet visit the next day cemented her as ours. 
This sweet little 6 week old kitten has been officially named Mitsey because of her big ole paws. Once she and our other kitten, Bootsie, figured out the pecking order (i.e. Bootsie runs the show around here), she fit right into our brood. We could not love her more, and she definitely is Sierra's kitty. 
She sleeps snuggled as close as possible to Sierra at night, and alternates between running around like a total spaz with Bootsie and  falling asleep in the most precarious positions. 
She was the perfect early birthday gift for our teenager! 

We are so proud of the incredibly fun and creative young woman Sierra is turning out to be! I cannot wait to see what God is going to do with her life - it's going to be big, of that much, I am certain. We're so grateful we get to parent our beautiful Joynado! 
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Monday, February 17, 2020

10 years in the making

This sweet, tender hearted kiddo turned 10 yesterday.

TEN.
Double digits.

I just can't even.

When I think of where we were 10 years ago. 

When we weren't even sure we'd get 10 minutes with him, let alone 10 days, week, months, years....

When he was so fragile, already struggling to breathe and they were whisking him away to stabilize him. 

When I think of all the scary moments in the 10 years since then. 
The multiple codes, the health scares, the surgeries, the setbacks, the sudden onset of heart failure, the nights in the hospital.

So many moments where 10 years old seemed like too much to hope for, too much to expect to be blessed with. So many dear heart friends who didn't get 10 years. 

And yet here we are, celebrating a whole decade with this little fireball of a human being we're blessed to call ours. 
I don't know how we got so lucky.

When I started to tell him how, if you had told me 10 years ago, we'd be sitting here, I'd have cried tears of happiness, he just rolled his eyes and said "Moooooommmm, can we not talk about that please???" 
So we won't. We'll just tell you that this kid is kinda awesome. 

Our beloved neighbor Denise made the trek all the way down from LA to surprise Bodie! 
I seriously don't have enough words to thank Denise for everything she has been to our family, and everything she has done for us! We love her so much and the kids were over the moon to see her. 

Bodie is currently obsessed with the Diary of a Wimpy Kid book series (and I'm obsessed with anything that will get this kid reading). 

So we decided to celebrate Wimpy Kid style, with a few friends over. 
The kids helped decorate "Cheese Touch" cupcakes. 
Wonder of wonders, Bodie has already been blessed with some very sweet connections in the form of some incredible boys who were happy to celebrate with him... 
And indulge his desire to "read" his Wimpy Kid books for the picture 
Last night, I asked Bodie whether Dusk and I had been right in predicting that he'd meet nicer boys to befriend down in San Diego than he had in LA. His response? "No, I haven't met nicer friends. I've met the nicest friends." He'll tell you that his favorite birthday gifts were the crossbow he received, or the Harry Potter Lego set. But if you ask me, I think his new friends have been the best gift by far. 

You know, one of the most universal truths about having a medically fragile kiddo is that every milestone is huge. Even the ones that wouldn't normally be.
But this one? 
Hitting double digits. 
That's a big milestone in anyone's book. 
Just maybe a bit more epic in this kiddo's case. 



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