Today, Kyrie herself had a fancy pants meeting downtown.
When you are a toddler changing the world, but kind of worn out from a hard week of breathing drama, it’s a good deal to get a ride from Papa in the stroller… and even more exciting to ride the escalator for the first time!
If escalators were not exciting enough, we got to ride an elevator, too!
And we were not so sure about the elevator experience.
But there we were, in a fancy pants conference room, turning down coffee because she is a Mormon baby, so totally off the coffee these days.
Kyrie loved the view from the 12th floor, especially when she saw trains! Choo-choo!
But we were there for business, and it was kind of scary.
Here’s what happened, quite unexpectedly, as best we can piece together (so some pieces may not be exactly untangled yet).
We wrote a book, Keeping Kyrie.
In the book, I may have perhaps mentioned that “the boss of medicaid” should try doing all his paperwork underwater and see how well he breathes.
I meant it, of course, in reference to the red tape and medicaid drama we had to fight to keep this little girl alive.
Crazy things happened, if you remember. Like how we got life flighted to Cincinnati Children’s, and then SoonerCare said they wouldn’t pay for it because we had just been up there on vacation. Or how they would pay for oxygen, but not the pulse-ox monitor stickers. Or that time we had to contact the boss of CMS, who is the federal boss of state Medicaids (my terms, not their titles), just to get her back to Cincinnati to finish a surgery we needed them to do. Or all those times they didn’t reimburse us for our Cincinnati trips because we refused to travel on Sunday because of our faith. Or those times we paid out of pocket to take her to Utah because SoonerCare wouldn’t contract with the provider.
Those are just the big things.
That’s why I said that, and in frustration at the system, not for hating on an actual individual.
Except it turns out he is an actual individual, and friends of friends who are friends of his heard about our book.
That’s how we got invited to a fancy pants meeting with someone who knows that underwater boss of medicaid, and he wanted to discuss our concerns and what “countermeasures” there were to offer to help us.
I looked at the email cross-eyed, not feeling entirely safe.
The meeting was to be with a top medical attorney, and I am just a mom who wrote a book, so that felt scary.
We sent the email to our attorney, and talked to her about what had unfolded so quickly.
She said he did not seem to be representing the state, really might be in a position to help, and that it seemed legitimate to her. She suggested we go if we felt comfortable, but not to sign anything (not even a non-disclosure notice), and to politely leave if anything at all made us uncomfortable.
So we went, not sure what we were getting into.
The guy was very nice, truly, and also has fostered and adopted. We talked about his family and our family, and we told him Kyrie’s medical story and all we have been through. We talked about SoonerCare, and what worked for us and what didn’t.
We told him about the big stories I just mentioned, and others – like how they wouldn’t get us a travel concentrator even when it wasn’t safe for us to be driving with eighty billion oxygen tanks in the backseat with the baby. We told him how she has scars from burns under and on top of her big toes on both feet because of having to reuse the pulse ox stickers so many times they weren’t safe. We talked about having to buy supplies on Amazon, having friends ship us donated supplies, and even trading supplies with a friend in India because there wasn’t any other way for us to get the baby what she needed.
We talked about SoonerCare bossing us around regarding which doctors we went to, which specialists were primary in her care whether it was right or not, and no one traching her for a year – and how despite her good days, medical cerebral palsy is preventable and should never have happened. We talked about how much her good days cost her in other ways, and how she sleeps so much extra to make up for them, and what it’s like to resuscitate your baby in the middle of the aisle at stake conference. We talked about her coding in church nursery, getting sent home from her fourth day of preschool, and how quickly her status can change because structurally everything is so positional and anytime she can breathe she is outgrowing that airway.
We talked about the impact on our lives as a family, about being separated for eight weeks while I was in Cincinnati the first time, and about how hard it was to have the children home all winter without outings or to travel to hospital trips just so we can stay together as a family. We talked about how the community has helped us raise money, how we have used all our savings to keep her alive, and how we have no idea what happens next.
I even talked about how the medicaid budget cuts made my job impossible – unethical and even dangerous – and how it deleted the livelihoods of my colleagues.
We talked about how good services up front save money in the long-term, and how a trach would have prevented at least five of her hospitalizations they had to pay for in the last six months.
We talked about how good the doctors and nurse practitioners are, how medicaid won’t let them do their job, and how we don’t like being referred to bad doctors or to clinics that don’t have time to do their jobs.
We did point out the good things, too, though, like how they have covered so much, and we are grateful for that. We also are totally in love with her case manager and nurse case manager for SoonerCare, who love her and are her biggest advocates and very responsive to me even via text. All our battles have been easier since we got those ladies, but it was an advocate friend from another state who told us to ask for them. Parents need to know they can ask for that kind of support.
We said it all. I didn’t cry, though I thought I might. He listened, attentively and kindly. He was even patient when everytime he started to respond to us, my mind was flooded with more pieces that needed to come out. I talked almost the whole time, and he was never rude about it. Kyrie walked around the fancy office eating naan and drinking milk and spreading crumbs all over, and he just smiled at her and giggled and chatted with her in baby talk.
It felt safe. It really did. And he wants to help, legitimately, I think.
He tried to come up with a health plan to help us, but there are not the specialists that know what to do, and not the physicians that will advocate for her because that brings up extra responsibilities of communication and hospital privilege duties, and none of them are paid enough for that – especially while having limits on their time. It’s so systemic, the problems that nearly killed her, and I could see it laid out on a map like a genogram in the middle of a nasty family therapy session.
He offered to call the boss of a hospital to get her on a special list to be sure we have good care, but that feels like going into the lion’s mouth when he’s already hungry and angry at us and asking not to get eaten. He also offered to make sure we get into a clinic associated with the hospital, but clinics like that are busy and have little time and are not going to be responsive in emergencies the way our doctors are now. I would rather drive to Bartlesville for good care there, where they know her and we are safe. They and we together seem to do well discerning what is emergent for life flights or not, and when we can just keep her home and ride through the scary.
There just isn’t anywhere here that can care well for her or do the surgeries that she needs, and as it comes time for those again in the future, I don’t know how it will play out. It’s like our only option is to move, but we need jobs for that, and transfer of the foster-adopted insurance, and all of that is really hard and complicated and hasn’t yet worked out. So we know we need to be here for now, and are doing the best we can by having them in the schools and therapies they need, even if we know this is just between crises. It’s the best we can do.
The only other thing to do, really, is to make voters aware of the impact of their choices, and to educate legislators about the real life consequences of the choices they are making.
We are not convinced the legislators want to be educated.
But, I said, we could make them cry.
We can make them feel.
And in that moment, maybe, just maybe, their hearts would soften just long enough to get some edumakashen in them.
I’m not sure.
So we are going to meet again, with the underwater boss of medicaid, who turns out to be a real person with a real name struggling with providing care for children in a state that keeps taking money away from them.
I get that. That’s my life, everyday.
They think they can use Kyrie’s story to help educate voters and legislators to make changes to improve the care of medically fragile children and those in foster care.
We can at least try.
If there’s even a chance at that, then it would make the last year worth it, and it’s kind of why we wrote the book, so we agreed to explore some ideas of how to make this happen and meet with them again. We will see. We are not sure yet what it means, and we don’t have any real time answers to help Kyrie right now, today, but we have ideas to help other families so maybe they won’t have to go through what we have.
That said, and though we don’t yet know if we have made any concrete difference, at least the book has people talking and becoming aware and trying. That makes a difference, right? That changes the world, at least a little? In the meantime, Kyrie is enjoying the perks: some fancy art on the 12th floor, and a little Naan.