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.
