More details to come once I’m at my computer to add more text. We’re sitting in the waiting room while Ellie gets her bronchoscopy in the OR.
All the things we used to make this happen:
We're Drowning in COVIDville
My family is in dire trouble and we’re struggling badly.
Today I received two notices that we’ve overdrawn our bank account, again. I am trying to figure out how to keep funds in our bank account without going out and possibly bringing COVID19 back home and putting Ellie at serious risk.
Friday, Nov. 14th I shopped and delivered a Shipt order and the store was super packed. My anxiety was through the roof. I cannot bring COVID19 to Ellie!!!
Monday we were in the emergency department (ED) with Ellie. She spiked a fever very quickly late in the morning and was having belly pain. Fortunately, her blood pressure (BP) and heart rate (HR) came down, her oxygen saturation went up and a slew of tests came back negative. Hallelujah!!! We were able to avoid admission by promising to do her shaker vest and cough assist despite the pain it caused her and we promised to go back to the hospital if her bacterial culture and sensitivity comes back showing she needs IV antibiotics. Ellie’s chest x ray showed possible lower lobe atelectasis or pneumonia. We got home with Ellie just before 3:00 AM.
We don’t have private duty nurses right now. Ellie needs 24/7 care whether she’s healthy or sick. When she’s sick, she needs two caregivers ideally. We are frontline workers in our own homes 24/7. We don’t get a break from being medical and healthcare providers. Even when I take a shower I hear phantom ventilaor alarms or the pulsoximeter beeping because sometimes I do have to run out of the shower and assist with emergency oxygen desaturations or trach plugs.
The thought has crossed my mind that I could send Jeff to go live somewhere else and he could get a job (or two) to pay our bills and he can take all precautions to avoid contracting coronavirus without the risk of bringing it home to us. But I cannot stay awake 24/7 to care for Ellie and Nathan without a second HIGHLY SKILLED caregiver who can do all of her care including how to rescue her during an emergency such as a trach plug or accidental decannulation. Not only does this person need to be skilled, they need to know Ellie and stay calm and in control during a life or death emergency. Oh yeah, and they need to be able to be awake and alert all night long, a full night shift.
We’re fortunate, Ellie’s grandpa is her community living support (CLS) caregiver and he does a great job helping to keep Ellie safe and he does a great job following gold-standard safety protocols. It’s easy to trust family members who love Ellie so deeply though. It’s not easy to trust a stranger, in our home, during a pandemic, while we’re asleep. We're also fortunate to have a roof over our head and health insurance thanks to Ellie's other grandparents. I don't even want to think about how much harder this would be without the family support we have.
If and when we finally get private duty or respite nurses to work with us, we risk them bringing COVID19 into our house. How do you trust a total stranger or a pandemic denier to be honest about quarantine practices? How do I trust people will properly wear their PPE and practice safe and sanitary care when I have fired more than 3 nurses in the past due to malpractice or being too lax with safety and sanitation protocols? I’m not surprised at all that Ellie is healthier now than she has been in a long time AND we don’t have nurses.
I don’t know what to do anymore. Our system is so broken. I’m so exhausted from constantly trying to come up for just one gasp of air. It’s like, before the pandemic we were all on a ship. Some of us could swim and some of us couldn’t. The virus came and busted our ship and it started sinking. Those of us who could swim, swam and swam and tread water to prevent from drowning. A minority of us, we can’t swim. Some of us because we never learnt to and others because their legs don’t work. We’ve been left to drown.
I will never deny the difficulty of this pandemic. It’s really hard for all of us. What I hope to make clear is that my family has basically been living in a pandemic since Ellie was born. Then when the COVID19 pandemic came, everyone else around us started struggling more too. The difference is that our safety measures were enough to keep Ellie pretty safe. Now, we rely on EVERY person to help keep us safe so Ellie isn’t killed prematurely by this stupid virus and the people who carelessly and selfishly do as they damn well please during a global pandemic.
I’m so furious and angry with people who think it’s okay to let this thing run its course for the sake of herd immunity. This is basically a death sentence for Ellie.
My mental health ebbs and flows regularly but it’s been deteriorating as we go further and further into debt. I’m having a really hard time seeing rainbows and unicorns right now. I don’t know how to juggle everything:
All of this while struggling with chronic pain, ADHD, PTSD, anxiety, lack of undisturbed sleep, chronic stress, medical alarms (pulse ox, ventilator), and two children with special needs who each need 1:1 attention and care. Plus my husband struggles with his mental health too. I don’t know what to do anymore.
Ellie is eligible for services via TEFRA. This waiver is to provide care to children who “WOULD OTHERWISE REQUIRE CARE IN AN INSTITUTION DUE TO… DISABILITY, AND...MEDICAL CONDITIONS”. My family is providing care above and beyond what is deemed feasible in the home setting without skilled and licensed caregivers. I’m not gonna lie, we’re pretty freaking awesome. Ellie is an awesome kid. We love her. To us, her life is priceless. It comes at a very steep cost though. We’re close to losing everything because we cannot financially sustain this situation.
We’re authorized for 84 hours per week of private duty nursing and 10 hours per week of skilled respite care through the MI Community of Mental Health (CMH). I believe the medicaid reimbursement is $40.44/hour to a staffing agency to pay a Registered Nurse (RN) to provide skilled care in our home to Ellie. So while we’re struggling and going further into debt providing exceptional care to Ellie, the state is saving a crapload of money. Meanwhile we’ve been struggling to gather PROOF that we’re struggling so we can qualify for poverty assistance and SNAP benefits.
Assuming the CMH reimbursement per hour for a RN is $32 and $40 for the PDN agency, the state is basically saving:
$32 per hour x 10 hours per week X 4 weeks in a month = $1,280 per month
$40 per hour X 84 hours per week x 4 weeks in a month = $13,440 per month
Which is a total savings for the state of Michigan of $14,720 per month.
Meanwhile, my family is going deeper and deeper into debt because we value our daughter’s life over money. Frankly, it’s not that simple even. We’ve struggled with many other things including our own mental health issues that are getting better with medication and therapy. None of these issues are set in a vacuum. They are all intertwined and it’s just a huge tangled mess. Our brains feel like tangled Christmas tree lights with a burned out bulb. Somewhere. The problem is, we don’t have the time, energy and resources to get it all untangled so we can be productive and earn a regular income. We’re trying though. We’re trying very hard.
On top of all of this, we’ve had threats that child protective services (CPS) could take our kids away because if we cannot pay our bills, we cannot, in their eyes, care for our children. This is the biggest load of BS. We’re in our situation because we take excellent care of our kids. It’s no fault to us that our children were born with genetic/congenital diseases and disorders that make life harder.
We’re doing our best with what we have. Unfortunately, unconditional love and determination to care for our children doesn’t translate to bills getting paid.
Please wear a mask and practice physical distancing. It’s the right thing to do. Ellie matters. My family matters. We will not survive this pandemic if people don’t start caring about others.
If my kids were both in school, we would be able to have full-time and part-time jobs. We wouldn’t STILL be in this predicament. Well, that is if we found jobs quickly when the kids started school.
Herd immunity by letting the virus run it's course is inhumane. It’s a death sentence to Ellie and my family’s functioning. If, in keeping Ellie safe and protected from COVID19, we cannot work outside our home, how will we maintain an income to support our livelyhood?
Please wear a mask and practice physical distancing. It’s the right thing to do. Ellie matters. My family matters. We will not survive this pandemic if people don’t start caring about others. Instead of living by "to each their own" let's adopt the mantra "for my neighbor".
How you can help:
Thank you for caring. Thank you for being part of our village. With love, Courtney
PLEASE BE A HELPER!
We're in the midst of a pandemic that will go down in history! In times like this, it's okay to not be okay. It's okay to struggle. Look for the helpers! If you cannot find them, be one. Help in any way you can. If you cannot help physically, say a prayer, send well wishes, emmit good vibes, call a friend, or tell someone you love them!
I will update this blog along with the document below when I can. Thank you! From the bottom of my heart, thank you for helping. Thank you for being here for us. Thank you for your support!
STAY UP TO DATE, FIND WAYS TO HELP ---> CORONAVIRUS INFORMATION REPOSITORY
It just keeps happening :(
We live on a busy road and our driveway meets the road on a hill. Passing is allowed for the northbound lane. No passing for the southbound lane.
My kids’ school bus stops on a hill and vehicles behind the bus, headed southbound, have limited visibility. Every day, people rip, roar, and rush around the bus not knowing if someone is coming up the hill in the other direction. The bus turns off the stop sign, while my daughter in her wheelchair is buckled into the bus safely and properly, to allow northbound drivers to continue driving. If the bus is even ever-so-lightly hit by another driver, it’s highly likely my daughter will, at a minimum, have broken ribs from her restraints due to osteopenia. If we’re lucky, her injuries will not be life threatening.
If you have a true emergency by all means, carefully make your way through, but consider your intentions versus risk and potential bad outcomes before passing. I know people are busy. I get it. Boy do I get it. But for goodness sake, slow the eff down and grow some “give a sh*t”. That’s my daughter. My world. A real, live, human being with brains, a heart, and a life we value. Her disability doesn’t make her any less important in this world.
Ellie has the biggest heart of anyone I know. She’s genuinely the happiest person I have ever known. Almost every time she gets off the bus, she turns around, waving to the drivers who waited patiently, saying “thanks for waiting for me”.Next time you drive by after waiting behind her bus, or any bus for that matter, I ask you, please wave back with a smile onyour face and pat yourself on the back for being a worthy member of society and part of the safety network keeping kids safe!
Please drive responsibly. Thanks for listening.
[Steps off soapbox]
*Feel free to follow our family on facebook to learn more about Ellie’s disabilities and how we make life work as a family in this community.
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Hi I'm Courtney, Ellie's mom. Along with my village I have been raising Ellie (and her big brother Nathan) while learning how to live with and support Ellie's physical disabilities and special needs. It's not easy but our village is amazing. Thank you to all of you who support us, love us, and give hope, send wishes and prayers. We are so incredibly grateful for our community.
Click the button below to make a donation to Ellie's MiAble account.