#bashthebrave

[bashs-mom-jessie]

Taylor, please help if you can. We’re trying to get Bash to New York for his surgery. It’s not going well. We’ve yet to find a charity that can manage him and his equipment and flies to New York. He needs this surgery and quite a few more. I’m scared I’m going to lose my kiddo. I’ve gotten almost everything else sorted. We have everything we need to travel. I got our insurance sorted out. The last two pieces of the puzzle are how do we get there and back and where do we stay while there. I’m working with a charity to find a place to stay. Normally we stay at Ronald McDonald House New York. Right now they’re closed because of covid. I’m paying 2K per month to keep our health insurance. It was the only thing I could do to make sure Bash’s surgery would be covered. The costs of the insurance are quickly eating through our savings. At this point we don’t even have the money for a commercial flight which we’ve already been told we shouldn’t use because if the risk of contractioning covid before or after Bash’s brain surgery. Please help. Please. This is me, a regular stay at home mom just grasping at every straw I can to get my kid what he needs, what they both need because Auggie can’t grow up without his twin. I just can’t even imagine.

He’s only two. Holy orange bottles, each night I pray to you, desperate people find faith so now I pray too. Soon you’ll get better.

[bashs-mom-jessie]

I’m over here in nyc with Bash doing everything we can to save his life and feeling stressed and overwhelmed and Taylor just drops album 8 almost like she’s saying “Jess it’s all gonna be okay and it’s all gonna work out and here’s your road trip home playlist”. It’s a little intense because she dropped Lover last August the very 1st time we were here and it was the thing (and still kinda is the thing) that kept me sane during that trip and each of the trips since.

The music video for “cardigan” will premiere tonight, which I wrote/directed. A million thank you’s to my brilliant, bad ass video team - Cinematographer Rodrigo Prieto, producer Jil Hardin, executive producer Rebecca Skinner, AD Joe ‘Oz’ Osbourne, editor Chancler Haynes, special effects wizards David Lebensfeld & Grant Miller and set designer Ethan Tobman. The entire shoot was overseen by a medical inspector, everyone wore masks, stayed away from each other, and I even did my own hair, makeup, and styling 😂 

[finallyclean-1989]

🆘@taylorswift PLEASE READ🆘

@bashthebrave 's message to Taylor:

"Bash has an extremely rare brain aneurysm, it’s called a vein of galen malformation. It’s really risky to treat and there’s only surgeons in the world who treat it regularly and have good results. We live in Colorado Springs and our surgeon who invented the treatment is in New York City. We normally fly commercial but Bash also has a tracheostomy and ventilator for lung disease of prematurity meaning he catches EVERYTHING. Every little cold. We can’t risk him catching covid on a commercial flight right before surgery. If he did he could get meningitis or have a stroke or brain hemorrhage.

I don’t often ask for help. But I’m running out of options. I’ve reached out to every medical flight charity I can and haven’t had any luck yet."

GUYS PLEASE REBLOG and get this to Taylor, she needs our help DON'T SKIP PLEASE

[bashs-mom-jessie]

Today was a better day. The boys turn 2 at the end of the month so our whole family went out this past weekend and took photos. I adore our family photographers Ashlee and Mario at Creative Captures Photography in Colorado Springs. They ALWAYS capture smiles and they’re so good about protecting Bash. They never scare him and they’re not scared OF him. Many people are scared of him because he’s on life support, people treat him more delicately that he needs to be. But he’s really truly just a little kid fighting to be like other little kids. He laughs and cry’s and rolls and plays and loves books and Sesame Street and all the other things little kids love. And his abilities and understanding improve drastically with every brain surgery because with every brain surgery to close part of the aneurysm comes beautiful new blood flow and growth to the rest of his brain.

I can’t wait for the day Bash’s brain aneurysm is cured. Won’t that be a day to celebrate?! But for now we’re celebrating his and Auggie’s second birthday. Time if flying. Days ago it seems they were babies, each could fit in my palm. Now they’re turning 2, Auggie is walking and Bash is rolling. It’s beautiful.

So here they are! Bash and Auggie’s “two the moons and back and two infinity and beyond” space themed photo shoot.

[bashs-mom-jessie]

Today was a bad day. Scott lost his job so now we’re in a health insurance bind. We can’t afford cobra. It’s 2k per month. I barely make 4K per month so the cobra premium and our mortgage would take my entire salary. And Bash has surgery coming up in July. It’s not enough time to get another insurance company to cover it. And the surgery is a million dollars. It feels like an impossible situation. Everyone I talk to says stay on cobra but they don’t seem to understand that we can’t afford cobra. I don’t know what to do.

And today it’s really hitting me that if Bash doesn’t get surgery he could die. Even if he does he could die. He’s barely even lived yet. I think about myself being 15 and buying my first CD (Taylor Swift) because Teardrops on my Guitar resonated with me so much. I was in love with one of my best friends and he had no idea I existed in any capacity besides a friend. Bash hasn’t experienced that yet.

Bash is 2 next month. On May 31st. It’s funny, my wedding anniversary is May 30th. I spent my 3rd wedding anniversary in labor and the boys arrived 5 minutes into the next day. If Bash dies he won’t have a wedding anniversary. I won’t get to see him get married. I won’t get to see him graduate high school or go to college or get a job or fall in love or get his heartbroken or have kids. I may not ever even get to see him “graduate” from kindergarten. And Auggie, Auggie already carries so much. He’s a toddler and he’s terrified every time one of Bash’s life support machines alarms. I try so hard to protect him from it but there’s only so much I can do. Will he have to grow up a twin without a twin? I just can’t even process that thought, Auggie growing up a twin without a twin. It’s heart breaking. I’m a mess.

[bashs-mom-jessie]

I could not get through all of this medical stuff with Bash without my husband, Scott.

He is... in love...

[bashs-mom-jessie]

I adore my children. Absolutely they are the loves of my life.

But raising them in this climate is so incredible difficult and fraught with worry. Daily I’m reading Facebook posts by other trach parents about their vents being pulled from their homes because of the vent shortage. I’m reading posts about supply shortages. I’m trying to arrange virtual doctors visits because we can’t risk going to the hospital. I’m doing therapy appointments virtually because I can’t risk occupation and speech and physical therapy coming into our home and potentially bring ANY sort of sickness with them. For our family it’s not just about avoiding covid, it’s about avoiding ANYTHING that could land us in the hospital.

We usually have in home nursing to help keep everything under control. We don’t right now. It’s extremely difficult. I feel like I’m pushing past my limits and it’s like a runaway train. If I don’t get a handle on it soon I’m going to crash. I’m exhausted as it is. This situation is overwhelming.

On top of all of this, I’m having to navigate the insurance system. My husband is separating from his job and while cobra is an option there’s a lot of balls in the air that have to be juggled to sort out our insurance situation. Bash qualifies for Medicaid which he has, but it’s secondary to our private insurance through Scott’s job. All our pre authorizations for bash’s brain aneurism treatments are already set up through that insurance plan. All our doctors and therapists are set up. And our deductible will reset. We already paid it once this year. It’s 8000 dollars.

If we put Bash on Medicaid alone he can’t get his surgeries in New York and the doctor there is the very best. But if we keep him on our current insurance plan through cobra we could lose our respiratory equipment supplier. They own bash’s vent. I can’t imagine trying to switch companies in the middle of a vent and supply shortage. I don’t even know how to navigate this.

Our other option is to get a new private insurance plan for our family. It’s cheaper than cobra but again our deducatble will reset and to go this route I have to find out what insurance company 1) has a plan we can afford 2) is in network with children’s hospital and our other doctors 3) would allow us to travel for specialists 4) is in network with mount Sinai in NYC and 5) what their procedure is for getting the doctors in New York who are not in network with anyone, to be covered as in network so that we don’t end up with millions in medical debt.

To top it all off, my grandpa has covid and is dying. I can’t even risk going to see him. He’s been my rock since my dad passed. The grief is crushing.

Auggie seems to know something is upsetting me because he is having severe separation anxiety this week.

I feel like I’m carrying the weight of the world this week.

[bashs-mom-jessie]

I haven’t been posting much. I’ve been trying to prepare for New York. I’ve been working with a charity that said they could fly us there but I just got the news today that they don’t have an aircraft for us and there’s only a 50/50 chance they can get us there.

I don’t know what to do. We can’t fly commercial right now. Bash cannot catch covid around his brain surgery. It could cause a hemorrhagic stroke which would be deadly. No plane, no surgery.

My stress level is like a 15 right now. We on cobra. My husband still hasn’t found a job. He’s a rocket scientist literally. He’s in talks with a few people but so far no luck. We’re living on my income which isn’t enough. I don’t know how long I can sustain paying for cobra. No cobra, no surgery.

I’ve tried finding another insurance company with zero luck. Nothing has out of network coverage and nothing covers New York City when you live in Colorado. We literally can’t afford to postpone the surgery because if we do I don’t know that I’ll have cobra anymore. It’s more than 1/2 my monthly income.

That’s the bottom line. I don’t know how long I can keep up paying for cobra. And I don’t know what else I can do to find a plane. The med team said no to road trips and commercial airlines. A private charity flight is the option that’s left. Problem is it’s hard to find a plane that can handle the weight of Bash, 2 adults, and 127 lbs of equipment. The equipment which is the bare minimum (I mean I’m already planning to ship ahead everything I can ship) is the weight of another person. But it’s Bashs car seat and stroller wheelchair and breathing machines and suction machines and oxygen concentrator and feeding machines and supplies.

No plane, no surgery.

No cobra, no surgery.

I’m all out of ideas over here and just praying for a miracle to keep my kid alive. This kid has come so FAR, we can’t stop now.

Please share this everywhere!

[bashs-mom-jessie]

My life is basically my kids (bash the brave and Auggie the awesome) and Taylor swift.

It’s not that I don’t have more in my life, more interests, more pursuits, just more. But my main focus, what I put all of my energy towards, is saving Bash. Getting Bash from here to healthy. And happy throughout the journey. And my break, the happiness I have outside of Bash, the topic that helps me cope, is Taylor swift. I’ve been listening to “soon you’ll get better” a lot lately. It’s such a hauntingly beautiful song. And I understand the sentiment all too well. Because Bash, my baby, my 1, almost 2 year old, is sick. He has so many health problems and it affects our family every single day in every single way. He has 27 doctors, 3 medical equipment companies, 3 pharmacies, 3 hospitals in 3 cities in 2 states (Colorado Springs, Denver and New York) and 6 therapists. My life revolves around being a stay at home mom to my crazy toddler boy, and my developmental delayed, extremely medical complex other toddler boy. It’s a lot. It’s overwhelming. And when I need something to help me cope, often it’s blasting my happy Taylor list, songs that make me wanna dance like shake it off, look what you made me do, state of grace, and so on. But someday Bash WILL get better and this will have just been a little piece of our journey.

[bashs-mom-jessie]

@taylorswift @taylornation @jessietheswiftie

It’s okay if all you did today was breath.

#BeLikeMeredith She’s out here teaching life lessons

@taylorswift @taylornation

[bashs-mom-jessie]

So we are in the ED. A place we’ve been trying really hard to avoid. I mean we haven’t left home in weeks in an effort to keep Bash safe from covid 19 and our first venture out is to the hospital. Fun.

The reason we’re here is because Bash won’t sleep in his crib. In fact he cries anytime he lays down and that’s usually the first sign that something brain related is going on. So here we are, in the ED. We’re on covid precautious because Bash is a vent patient and vents can aerosolize any germ Bash does have. We had a cat scan and a shunt series (xrays that follow the path of the shunt) and now we’re waiting for neurosurgery to look at it.

It’s an especially stressful situation because our neurosurgery team is in New York City. I don’t want the neurosurgeon associated with our local children’s hospital going anywhere near Bash. She is a very rude person who made mistakes. She refused our transfer request when we first came in in June of 2019. Then she threatened me with legal action forcing me to agree to a shunt. Then she placed that shunt incorrectly resulting in multiple procedures which could have been avoided if she’d transferred us. And while we worked with her she disparaged our team in NYC who are EXPERTS in Bash’s type of brain aneurysm and refused to work with them. She’s so fucking egotistical that I just don’t even know how to deal with her. So suffice to say we don’t work well together. And I refuse to let her ever touch Bash again.

Send us good vibes for healing please!

[bashs-mom-jessie]

I’m really scared right now. I’m really scared for Bash. This virus is terrifying. Bash already has lung disease. Auggie does too, his just isn’t as bad as Bash’s.

Right now in Indiana my grandfather is in an ICU with a cascade of organ failure that can’t be reversed and he’s dying. Tomorrow they will take him off life support and make him comfortable.

I can’t even go be with him because of the risks to my kids. It’s not even just coronavirus.

If my kids get coronavirus they could die.

If my kids get anything else that lands them in the hospital they could get coronavirus and die.

If my husband or I get coronavirus we could die, but even if we survive it our kids could die because there isn’t a lot of people who can care for them, especially for Bash with all his medical complexities.

If the virus continues to spread and people continue to need ventilators we could run out of supplies for Bash’s vent and he could die.

If we run out of masks and we need to access his port he could die from sepsis if we’re not sterile.

If I don’t get the hydroxychloroquine I need to treat my spodlyoarthritis because of the nationwide shortage I could go into a severe flare get sick and die.

If the company that rents our vent to us try’s to take it for hospital patients what do we do? There’s already talks about taking portable and backup vents from homecare patients. Without his vent Bash will die.

This is terrifying and I do my best to keep positive and find the joy in life and just generally cope with everything but right now I’m terrified and having trouble managing in.

Good thing my therapist is getting telehealth up and running.

[bashs-mom-jessie]

Today I’m exhausted and in tears. I don’t know how to get Bash to New York City. I’ve called 21 different medical flight providers, some charity and some not and some landing somewhere in between. I have had no luck. It’s such a long distance. It’s too expensive. Bash is too complex. It’s out of their area. Some charities pay for commercial flights which our medical team has already said no to. I’m exhausted. I’m overwhelmed. I’m sad.

I feel defeated. Never in my parenthood journey have I felt so defeated. Never have I felt that any task was insurmountable. This feels that way.

I’m all out of rabbits to pull from a hat. I’m all out of tricks. I’m all out of ideas. I don’t even know where to go next.

Best,

Bash’s mom Jessie

@taylorswift

[bashs-mom-jessie]

We made our family portrait from the boys 2nd birthday a cartoon! I love it. 😍

I have had no breakthroughs regarding transportation to NYC and I’m all out of ideas.

- travel via RV road trip - nixed by medical team because of possible road complications

- commercial airline travel - nixed by medical team because of possible covid exposure

- private medical charity flight - the charity hasn’t had any luck so far getting a plane for us.

If we can’t get there Bash can’t have surgery.

I DID have a small break through on the insurance side of things.

So we kept cobra despite the expense because we couldn’t find another plan that would cover Bashs medical team. None of the exchange plans available have both in and out of network benefits which is the key to getting it covered.

What we did find is a program that helps pay for the cost of insurance for patients who have secondary Medicaid so that will give us a little bit of financial relief.

Even with that help I’m not sure how long I can keep paying for cobra. It’s $2100 per month and I only take home $4500 per month so it’s nearly half my income. When Scott starts working again it’ll be more manageable but for now we’re blowing through our savings to keep cobra.

I’m all out of ideas so if you’ve got any let me know.

[bashs-mom-jessie]

Our February 2020 NYC trip - Bash’s 2nd embolization surgery for his VOGM

PART 3

[bashs-mom-jessie]

Our February 2020 NYC trip - Bash’s 2nd embolization surgery for his VOGM

PART 2