Sprout and I went on a little field trip this week. We’ve been dying to get her into Nemours Children’s Hospital for well over a year now, but the gears grind slowly.
First I thought our insurance wasn’t accepted there at all because that’s what I’d been told. Then I found out it could potentially be accepted there if we appeased the insurance gods by jumping through 16 hoops backward while holding a flaming log and patting our bellies at the same time.
The insurance gods were half appeased. We got approval for Sprout to go but not Sunny, and Sunny needs it more desperately. But the two girls, while both on Medicaid, have different carriers. One balked. One agreed to it. We are still trying to change carriers for Sunny so she can go too.
I’ll take what we can get though, and I immediately scheduled a trip to Delaware for Sprout and me.
We stayed with some gracious friends of my sister outside Philly, which was wonderful. No hotel for us with a 4 year old climbing the walls from boredom! And on Thursday, we drove up to Nemours.
The first thing you notice when you drive up is a giant bell tower that Sprout calls “The Princess Tower!” Then? You notice a massive playground. Sprout’s nerves evaporated when she saw that playground. I’d been telling her it was a hospital for kids like her but she hadn’t fully believed me until she saw the playground. She absolutely skipped into the hospital, with promises of a romp on the playground when we were done.
The building itself is well loved and older, but the people who work there are amazeballs. Everyone from security to nurses to check in staff to x-ray techs to doctors were incredible with Sprout. They were kind, respectful of her as a human, and went out of their way to be helpful.
I met the folks I’d been talking to on the phone, which was so nice and is rare. The care coordinator on the doctor’s team is incredible – she’s been a foster Mom who adopted out of foster care too, so she knows the drill and truly gets it. And she’s feisty. I don’t think insurance companies can push her around at all. She gave Sprout a book about being a Little Person, and best of all? She’s a Little Person herself. She understands Sprout in ways most people just can’t.
The doctor? Oh my god. The doctor. Dr William Giles Stuart Mackenzie (not to be confused with his father Dr William George Mackenzie) spent so much time with us! His Resident did too. And his NP met us. And all his staff met us – his assistant and the care coordinator and a nurse. It was incredible to be welcomed wholeheartedly by a team. We were not rushed for a single second. They truly took their time and answered every question with care and concern and making sure we understood everything.
Their knowledge about skeletal dysplasia and Sprout’s type and complications is just unsurpassed. That’s just what their team does – skeletal dysplasia. They’re world renowned experts and it shows! They showed us the x-rays and walked us through them. They recommended a surgery on Sprout’s knees to help straighten them, that’s not super invasive.
To their credit, the orthopedic surgeon in our hometown knew she needed that surgery but also knew it was beyond his skill set because he doesn’t understand Sprout’s predicted growth patterns well enough, but Dr Mackenzie certainly does. It honestly makes me trust our hometown orthopedic surgeon more knowing he’s aware and honest about his limitations – his ego is not in the driver’s seat. I think he’ll team up incredibly well with Nemours doctors.
The Nemours doctors all work as a team across specialties. Every Thursday morning they sit down and talk about all their patients together, to coordinate care, and learn from one another. In an age when most medical care is driven by insurance limitations, it’s incredible to me that they take time to have discussions that likely aren’t covered by insurance but make care better for their patients.
We’ve been to orthopedic surgeons and to geneticists across our state and finally, finally, we landed in the right place. No more doctors shrugging and telling us they can’t help her because she needs specialists in skeletal dysplasia. We have the specialists in skeletal dysplasia now!
I cannot wait to get Sunny there. She needs it so damn badly. She has hip, knee, back, and elbow problems causing her significant and chronic pain. I cannot believe insurance turned her down… but then again, I can. Medical care for the poor is abysmal. But we are trying to switch insurance carriers to Sprout’s carrier in hopes we can get her there as soon as possible. Say a prayer or send good vibes or whatever it is you do.
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