A quick background recap for those who haven’t read the book yet:
Medicaid makes us go to a pulmonologist because the baby is on oxygen, even though the problem isn’t her lungs.
The local ENT we have is willing to trach her if someone else confirms that is what she needs.
Medicaid is making that second person be the pulmonologist.
He’s actually a very kind and patient man, but he is a lung-man, and Kyrie’s lungs are fine except for being too small from not being used enough.
He’s just the wrong specialist.
Because he is worried about lungs, he rightly knows three things about how we breathe: our lungs work to pull air in, our heart pumps it around, and our brain tells our lungs to take its breaths.
When the problem isn’t the lungs, he naturally looks at heart and brain.
He is doing his job right. He is. He is just the wrong job-do-er for the problem.
It’s like using a hammer to screw in a nail.
It’s not a match.
So cardio is checking and double checking her heart, but nothing is wrong except it is working too hard trying to get oxygen pumped into her body.
The EEG is still going, and the pulmonologist is now convinced (even without any results from the EEG) that the problem is neuro because she had that stroke last summer in the medulla something that is where your brain tells you to breathe.
That may or may not be, and we haven’t seen seizures but this test will tell us, but all that is secondary complication to the problem, not the problem itself.
He is saying this is just her baseline and then she will pass away.
We are not doctors.
But we are parents who pick good doctors.
And the Utah ENT, who is the correct specialist doctor for her problems, says there is a way to help.
Her numbers on the monitor are not the problem because her problem isn’t (mostly) maintaining sats; her problem is the cost of her maintains her sats. She does so at the expense of her weight and energy. This means she can have a perfect sleep study and fail another, or be in the hospital one night with gorgeous sats and code the next night. It’s why her weight drops when we take her off oxygen, and why she is sleeping 22 hours a day. She is slowly slipping away from us, and starting to give up trying.
And we are not okay with just watching while they pass her around until she dies.
Medicaid won’t contract with Primary Children’s like they did Cincinnati, even though this is ENT and Cinci was for plastics. We have paid for outpatient visits out of pocket. We do not have enough money to pay cash for surgery.
Our family pediatrician and nurse practioner are amazing, but can’t successfully care for our family if the specialists they refer to don’t work together or do what is recommended.
We really don’t know, at this point, what choice we have but to move so that we can get her help.