#bashthebrave

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.

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.

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.

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 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

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 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!

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.