Tuesday, March 29, 2016

We need help.


We need your help.

We have seen your help work in the past in so many ways, in your prayers for all of Bodie’s multiple heart surgeries and Dusk’s surgeries and heart attacks. We have seen it work in how quickly you mobilized to come alongside us and rebuild our lives after our house burned down. Today, we need it in a way we never envisioned asking for it. 

We need the power of social media.

As you may know, Dusk had to have both of his hips replaced at the age of 39 due to a bad reaction to 6 days on Prednisone for an inner-ear imbalance. We have not discussed the aftermath of his first surgery on social media, because, to be honest, we have never wanted to publicly disparage the surgeon involved. We understand the power of social media, and have never wanted to use it to disadvantage someone. But we have no choice at this point.

The surgeon who replaced Dusk’s first hip was Jonathan Nissanoff. He represented prior to surgery that he was a Blue Cross PPO Preferred Provider. After the surgery, we were billed from a different office that was NOT a Preferred Provider. His office and our insurance company fought for almost 2 years before coming to an agreement. During that time, Dusk underwent a particularly difficult recovery due to the way the surgery was done (and still has significant pain to this day), and we had tremendous issues dealing with the office, among other problems.  You can read about some of our issues here and here

Some time after the insurance company and the doctor’s office came to their agreement, we were verbally told by the office that our balance was paid. Shortly after that conversation, Dusk updated an already unfavorable Yelp review about Dr. Nissanoff. 

Since that time, we have been sent a cease and desist letter based on the Yelp review, a collections agency has been sent after us for what we believe to be a fabricated balance, and we are now being sued for over $14,000. 

We offered to take down the Yelp review.

The doctor did not budge, claiming the lawsuit has nothing to do with the Yelp review.

Earlier this week, someone else posted a negative Yelp review. We did not write the review. Despite us indicating so, the doctor’s attorney has now subpoenaed Dusk’s IP address as well as the IP address of the negative Yelp reviewer, because they believe they are the same. Even though the case "isn’t about the Yelp review." I wish I was making this up. 

You guys. 
We are being harassed. 
I wish we had money for days to fight all of this off, but, unlike the doctor’s insurance company, we don’t. We are just a family living in Los Angeles, just trying to survive,  trying to make ends meet. A family who has been through way too much already. If you’re new to our blog, you may not be familiar with our story. I’ll summarize it below.

In the last 9 years, Dusk and I have had 7 miscarriages; he had a bad reaction to a week on Prednisone, causing him to need both of his hips replaced at 39 years old; our son was born with a severe heart defect that has required 5 open-heart surgeries, 5 cardiac catheterizations, over 7 months spent in the hospital and countless other procedures (so far); Dusk has had 2 heart attacks and his knees are shot; our house was burglarized and burned down a year later. Oh, and I am looking at surgery for a herniated disc in my back.

(As an aside, I wish I was also making all of that up.)

The doctor knows ALL of this, and is choosing to pursue this lawsuit anyway. It is really beyond unconscionable. His office had the nerve to send the collections agency after us just a few months after our fire, as we were dealing with living in a rental home and trying to inventory the enormous losses in our home. We know he was aware of our situation as we made both his office and the collections agency aware of it.

We have tried being reasonable. We have tried to satisfy him. But it is clear he will not stop. We can’t keep fighting this, either monetarily or emotionally. This has to stop.

We don’t know what else to do other than to spread our story. 

Please help us. 

How you can help:

1. Advocate. 
If you know friends in the Southern California area who are contemplating orthopedic surgery, particularly hip replacement, please steer them elsewhere. We personally recommend Dr. Joel Matta  in Santa Monica. He did Dusk’s second hip surgery and, if we could go back in time, we would have had him do his first. People travel from all over the world to see Dr. Matta. He is an incredibly talented surgeon, his bedside manner is wonderful, and his office is a dream to work with billing wise. Please help your friends and acquaintances avoid finding themselves in the situation we have found ourselves in.

2. Pray. 
Please pray for our family. All of this, culminating in the lawsuit, has brought so much stress into our lives, which are already much more stressful than they need to be. Please pray in particular for Dusk, as his arrhythmias are adrenaline induced and can be exacerbated by stress. It is hard to believe that no cardiac events for years and years – and now 2 in the last year, since all of this harassment has started – is simply a coincidence. At a time when we are trying desperately to identify and eliminate stress inducers, we have no ability to control this one. Please pray for health for all of us.


Tuesday, March 22, 2016

The Courage of a Lion

When Bodie was 18 months old(ish), we enrolled him with an amazing company called Beads of Courage, who provides beads to children who've been through medical trauma, so that they can "record, tell and own their stories of survival." At that time, Bodie received beads for his first 3 surgeries and accompanying hospital stays. You can read about that (and his massive collection of beads) here. It was amazing, we all ooh'ed and aah'ed. And promptly put them in the bag they came in. And left them on his dresser.

And then totally freaked out when we thought we lost them in the fire.
And then found them again.
And then left them in the bag again (in my defense, we kind of had a lot going on).

Fast forward to last month, when Bodie wanted me to help him share his Beads of Courage with his kindergarten class (so.stinking.cute) during CHD Awareness Week. 
Which was about when I realized "holy crap, he only has 3 open-heart surgery beads on here. We haven't updated them since he was 18 months old!!!"

So, I tallied his procedures from 18 months until now. Ok, I estimated, because we all know I have waaaaaaaayyyy too much PTSD to actually remember everything that happened. But whatever, it's the thought that counts, right? 

His beads arrived last week and he and Sierra (and Dusk and I) got busy stringing them. 
And he had too many beads to fill the strings allotted (again!), so we'll have to get more. But we strung what we had and I'm kinda loving them.  We put the 2 new strings right up with the rest of them (now on his wall, so I'm not worried about losing them anymore).
The string with his name on it is his first string, which includes all 3 of his first open-heart surgeries. We put his Fontan string right above it (you can tell it's his Fontan string, since it has 2 open-hearts on it (the red hearts - duh, right?) and a new special bead, made just for him with a sweet message (the lobster one).
(for the record, his "what the heck happened?" string (i.e. not his Fontan string, but where all the other beads from the past few years went) is on the bottom right of the picture of all of his beads.)

I tried to do a "then and now" photo op, but I'm pretty sure this is officially classified as a Pinterest Fail.
Whatev. Nailed it.

And, if you're counting, his bead total now includes 5 cardiac catheterizations, 17 central line and PICC placement & removals, 42 clinic visits, 100 nights spent in the CardioThorasic ICU, 15 days spent on TPN, 50 dressing changes, 61 echocardiograms, 4 emergency/unusual occurences, 26 antibiotic infusions, 53 nights spent in the step-down unit, 75 days spent in isolation, 7 different instances of learning new medications, 170 IV Starts and blood draws, 185 CT scans, EKGs, MRIs & X-rays, 6 tranfusions, 28 NG, chest tube & foley catheter insertions and removals, 22 days spent on a ventilator, 65 visits from PT/OT/Nutrition, 3 extraordinary experiences, 5 cardiac surgeries and 11 hospital discharges.

For all of that, and the privilege of seeing how far he has come, I'll gladly take a million pinterest fails. 


Tuesday, March 8, 2016

On rising up...

Two years ago, at almost this exact time, our house looked like this.
(as an interesting aside, this picture was taken by a mom in my local moms group - she posted it in our group asking what was going on. I saw it later that night. Cannot explain how crazy it is to see a picture of YOUR house on fire on social media before you have even had a chance to tell anyone yet.)

 By the next morning, our home would look like this, and our life would be forever changed.
It's amazing to look at these pictures. It almost feels like it happened to someone else, like a bad dream. Looking back, I can't believe that actually happened to US.

Tonight, we celebrated how far we have come as a family since that night, and how much God has done for us, and protected our family. We celebrated with dinner at one of our favorite local haunts. 
 And lest you think that picture is bad, this was my other option. 
(better known as the mug shot and poltergeist boy, with some random girls behind them.)

Whether we should "celebrate" or just pretend this day never happened was a bit of debate between Dusk and I (and apparently everyone else in the human race - with me falling on the lone side of believing that we should indeed celebrate). But I think it is SO important that our kids understand that we rise up from experiences like this, that we live through them, that we fight through them, that they shape who we are, but that they do not define us. So, we recognize the day and celebrate that today is NOT that day, that today our house did NOT burn down. (As it turns out, I may have a slightly lower than typical threshold for things that require celebrating.) At any rate, we ultimately used it as an opportunity to reflect on God's abundant blessings on our family, and the beauty amidst the tragedy. 

May you also find beauty amidst the tragedies of your lives. 
Or, you know, just celebrate because your house didn't burn down today.

Thursday, March 3, 2016

Embracing the chaos

We made a pretty big change to our family this week. We added a pet! 
I know, for most families that's not such a big deal. But for our family, it's huge - and here's why. 

Our family has been living in chaos. 
Pretty much forever at this point.
In fact, I don't remember a time when our family wasn't marking time from trauma to trauma.

Dusk and I both grew up with pets. We absolutely fundamentally understand how good pets are for kids. But, with all the trauma in our life, we just couldn't bring ourselves to bring a pet into our home. (And I don't just mean because of Bodie's heart defect - we know tons of HLHSers with pets. It's because of everything else - Dusk's medical issues, the fire, and just everything else. We just didn't think we could handle a pet on top of everything.) That wouldn't have been fair to the pet - or to us. 

But this past weekend, Dusk and I decided that we were ready, that the kids were ready. That maybe our life wasn't ever going to be free of trauma and chaos, that maybe this is just the season God has called us to. So maybe, instead of waiting for things to be perfect, we just needed to make the most of this season we're in and add a pet. (But just a cat - a cat we could do. A dog we're not quite ready for.)

So we put ourselves on all the local shelter lists for (what they so eloquently described as) "a bombproof, sweet cat" that could handle a household that runs on chaos. We walked into our local no-kill shelter on Tuesday afternoon, and wanted a male, orange tabby kitten or maybe a 1-2 year old (so basically either one we could mold, or one who had been manhandled a lot and could handle us). 

And we walked out with this.
A beautiful, sweet 6 ½ year old, white, female kitty.

She wasn't at all what we wanted. 
But, as it turned out, she was exactly what we needed.
An unbelievably sweet and mellow kitty, who can't help but purr the second you start petting her. 

Dusk and I are both in love.
She loved me…until she met Dusk…and then it was over.
I'm not even kidding when I say that. 
The kids and I were home tonight and she had run under the bed. She had been under there for awhile. Within minutes of Dusk coming home, she was out on the bed, purring away, just waiting for him. 
I'm pretty sure I'm going to have to remind her that he is MY husband on a regular basis. 
But I'm ok with it, because if someone in this family needs some pet therapy, it's Dusk.

And the kiddos absolutely love her…which she tolerates, for the most part. 
She's getting better. She opened up to Dusk and I really quickly, sleeps on our bed already and loves to lie next to us. She acclimated very quickly for any cat, let alone a rescue kitty. It's taking a little longer to warm up to the kids. She likes them, but will only let them pet her for a short period of time. Yesterday, she shot under the bed the second they got home from school. But today was better and she let them pet her for a bit. They were over the moon.
She's opening up to Sierra and definitely vibes with her more mellow side.
Bodie…well, he's a whole nother Oprah. He is obsessed with her and she is pretty scared of his crazy energy. He's trying to learn to be calm (which is GREAT for him), but is a hard lesson. He's taking it pretty personally that she looks like a deer in the headlights when she hears him running down the hall. 

I was feeling so bad for him tonight when he was crying about it. I was almost regretting the whole cat thing. And then I walked into our bedroom to see Bodie hanging out with Dusk and the kitty was right by his side. For the first time, she was cool hanging near him. 
(Yeah, I know, she looks pissed in this picture. But his face is priceless.) We're so hopeful that the more she adjusts, the more she'll bond with the kiddos.

So for now, we're embracing the chaos in our life. And this sweet little kitty is helping us do just that.