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!!!

Sick in the ED at Mott. Our docs, nurses and RTs were amazing.

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.

100! 100! It always feels like I've hit the jackpot!

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:

• Family finances
• Mental health struggles (since before the pandemic)
• Keeping Ellie alive and healthy
• Household chores
• Virtual schooling
• Fighting for FAPE and appropriate IEPs for two kids
• Cooking and feeding my family
• Preventing infections and COVID19
• Searching for work
• Frantically finding funds to prevent bank overdrafts
• Communicating with medical teams and scheduling & attending appointments
• Reading and responding to emails for school, job applications, work, etc
• Fighting for our fundamental rights (education, medical, etc.)
• Advocating for policy change so maybe things won’t be so hard in the future for us and other families like us

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.

We need:

• Dedicated private duty nurses 
• Jobs safe from COVID19 
• Jeff has experience in engineering and has a B.S. in Physics. Can someone help him find a job?
• I am a registered dietitian nutritionist. I have a small business. I see clients virtually. Please share my link or refer clients my way!!! www.savorlifenutrition.com
• Live-in help possibly. We cannot afford an au pair or nanny but if a college student enrolled in online school is interested in a place to stay in exchange for help with kids and housekeeping, that would be extremely helpful. 
• We need people to take COVID19 seriously and do your part so my kids can be safe and go back to school. 

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:

1. Follow best practices for beating this pandemic and controlling all contaigens.
2. Share our story.
3. Help others.
4. Buy our stuff listed on Facebook marketplace.
5. Support small businesses, including ours. Savor Life Nutrition and A2CNC
6. Order professional grade supplements through Courtney.  This is a simple one if you're already purchasing supplements such as multivitmins, vitamin D, or omega-3s.
   
7. Share our resumes.  Courtney is a Registered Dietitian Nutritionist and Jeff is an Engineer with a degree in Physics.
8. Order your groceries via Shipt and use my Shipt code: D4DD5B to get free groceries plus, I will make a little dough when you sign up too.
9. First shop local but if you can't shop local, please order by clicking through our affiliate links and we'll make a small comission.  These can be found in the banner on the blog page and throughout our websites and social media.  If you have little kids, consider a Sago Mini Subscription box.  Sago Mini has been a favorite in our household for years and it's a fantastic business.
   
10. Be a team player.  We're all in this together.  Act like you care even if you don't.

Thank you for caring.  Thank you for being part of our village.  With love, Courtney