“Look at my leg! I have a cast, it’s broken.” I’ve heard that a lot over the last few days. Amy is super aware that her leg is broken, but she doesn’t realize what the implications are. She needs surgery, and based on our experience with the McFarland, I know healing will be a struggle, if it can happen at all. Our chances at amputation just jumped way way way up. 🙁
So here we are. Baby with a broken leg. So what are we going to do? My first thought, as it always has been, is to ask Dr. Hoffinger. Dr. Hoffinger is not here, and I really have no one that I trust to make these kinds of calls. Stupid London. Why can’t we live in London?
So now what?
So from my understanding a classic rodding surgery has about 50/50 success rate. 50% is not very high. Classic rodding is what they wanted to do at Stanford when we thought she was broken last year and I know that it’s probably what they will do at Shriners, although I know Dr. Lerman says he likes to do bone grafting in as well, but they don’t do fixators. Why don’t they do fixators???
My thoughts stray to Florida with a 900th time. In Florida they do a rod, internal fixator, bone graft, Zometa infusion, and they have results of 100% success!!!
I know that after every surgery the odds of being successful go sharply down. We need to do this, and get it right the first time. There’s only two ways to do that in my opinion. The first is to go see Dr. Paley, and the second is to find someone else to do Dr. Paley’s method. I am found in determined to find a way to have the X-Union surgery.
So, let’s start with Florida. How do we get there? How can we afford it? I’ve already started talking to people at Paley’s Institute. I found out that they would except the insurance that Amy’s dad has offered through employment, but it’s for more expensive PPO insurance.  Like about $500 more than what we’re paying now expensive. And then there’s the nicotine surcharge, I think that’s like 10 or 20% more even. That is crazy.
Then there are the more expensive premiums, there’s $1000 deductible for the plan, but there is a $5,500 out of pocket maximum. So for the whole year you wouldn’t pay more than $5,500. So that’s positive. PLus the Paley center is in network for the insurance plan so that is awesome.
On top of all that, there’s getting there, a place to stay, leaving my family for THREE WEEKS while she gets treatment, food while we’re there, not to mention all of the co-pays were going to have for physical therapy, and this, and that…
Once all that’s done and over with and we’re home then it’s pretty much the same as we’ve been doing, but then will have to do it all again in a couple of years. It’ll be a smaller stay in outpatient surgery, but it still traveling to Florida and out-of-pocket max and all of that, plus we have to pay that higher premium for all of those years from now until when she has that second surgery. Yikes!
I suppose we could do the whole thing without insurance, but I have no idea what that would cost. Roughly the size of a house is what I’ve heard but are we talking about like a small shack in a rural area house? Or are we talking about a nice three or four bedroom in the bay area? It makes a difference, People! lol. What I do know is that if you self pay, The Paley Institute requires a $10,000 deposit due the day that you book your surgery. Ouch !
I think we’re gonna have to do this with Insurance. I can go back to work and dump my whole check into it, there are grants that are available out there, we could do a GoFundMe or something similar, there has to be a way to get this done. My babies leg is at stake. We have to get this done!!!
That’s just medically though. There’s still flights to and from Florida, accommodations for 3 weeks (that’s the biggie!) food, and not seeing my family for 3 weeks. That is so hard. But this is my baby’s leg! How can I do any less?
I need to go back to work to make this happen. Amy’s Dad wants to talk to a new doctor at Stanford, Dr. Frick, but I’m pretty sure Florida is what we need to do. More information is never a bad thing.
WHY ISN’T MEDICARE4ALL A THING???
