DorrieDorrie

Disjointed Nada0

Very little new to report here. We’ve gone into lockdown mode for the winter already, but to be perfectly honest, that’s really not very different than our normal mode.

Dorrie had a follow-up echo and everything looked normal. I’m cautiously optimistic that we may be able to mostly drop that specialist after next year, but I seem to remember being told everything was normal last year too, and then other doctors spent months going on about how it wasn’t.

I uploaded a bunch of pictures a while ago to use in a post and then somehow never wrote it.

Tickle attack

Hanging out on the brown pillow.

One day, I was laying down next to her. My hairband came off, and rather than get up, I patted around behind my head trying to find it, but it was missing. So I sat up and discovered where it had gone.

Posted: moving forward... or not, our little witch

Road Trip4

Sadly, Dorrie is not rich in the grandparent department. Both my dad and Bob’s mom passed away before she was born, and of the generation before that, only my dad’s mother is still with us. Great-grandma B doesn’t travel far anymore, so Dorrie had never yet been able to meet her.

We’d had a lot of plans for this summer, predicated on health (which we mostly had) and being off the vent (which didn’t happen). Then there was the whole swine flu thing and in the end, very little was different between this summer and the last one. But we still really wanted to get Dorrie out to visit her great-grammy, and we wanted to do it on a Friday so our routine wasn’t completely demolished — weekends have a bit more flex in their schedule than weekdays.

Everything managed to come together two Fridays ago. My mom arrived early on Friday morning, since she was coming with us and we were all going in her car. After some errands were completed, and a fruitless search for the directions to her new chair, we packed Dorrie, her car seat, her new chair (more difficult than expected), all her gear and a spare oxygen tank into the car. For the very first time, daddy got to sit in the back seat with Miss Dorrie while we were driving! Our car does not have enough leg room for him to do this when Dorrie and all her stuff are packed inside.

The ride out was marred by some incredibly heavy rain. At times visibility was pretty poor due to the downpour, but it wasn’t quite bad enough to require us to stop and wait it out. Dorrie was very good, though, happy to look at the trees going by and at daddy. We even risked giving her some food in the car, something we generally avoid if at all possible. But she kept it all down.

We got to great-grammy’s house in the range of time we had said we would. Then we left the vent in the car (!), got Dorrie and her O2 tank into her chair and wheeled her into the house. Fortunately, great-grammy has a nice wide ramp up to her door to accomodate her cane or her walker, whichever she is using that day. It fit Dorrie’s chair quite well, even with the O2 tank holder sticking out of the side.

The cats were shut up out of the way and we got Dorrie set up in the front living room. We had all been worried that she would be worried at being brought into a strange place amongst unfamiliar people, but she was fine — better than fine, she was quite interested and relaxed, more than willing to smile and look around. I think it helped a lot that there were familiar things in the room: chairs, a sofa. It didn’t look anything like a doctor’s office, which Dorrie can recognize instantly.

She even consented to allow great-grammy to hold her without protesting. She wasn’t quite sure she wanted to go so far as to smile, but after being held for a time she dared reach out her hand to try and touch great-grammy’s face. Of course, with her poor motor control what she actually ended up doing was giving her a few smacks.

We stayed a couple of uneventful hours, then, just as it started to rain again (TYPICAL), we went outside to get all wet and get everything and everyone packed up again in the car. It took us quite a while to get it all resituated, and we had to stop for gas before we got back onto the highway.

Then we ran into traffic (twice), and stopped for a while at a rest stop to grab snacks, so the drive home took considerably longer than the drive there. It was pushing 10 by the time we got back. After everyone had a bath or shower and we changed the vent circuit, it was just about midnight when Bob and I split up for bed. Fortunately, Dorrie was pretty tired (I’d like to meet these mythical car-sleeping babies, because we sure don’t have one ourselves) and went right to sleep.

Posted: our little witch

Insurance6

In mid-August, we suddenly (? at least it was sudden to me — it’s possible Bob had known for a while and forgot to tell me) found out that our insurance company would be changing on Sept 1. Not unexpectedly, the new insurance plan is much crappier for the same money.

<rant>
The way we pay for health care in this country is seriously broken. Tying insurance to an employer is a ridiculous system which traps people in dead-end jobs and chains them to for-profit “insurance” companies that manage health resources in completely unethical ways. Capping payments on a yearly or lifetime basis for medicines or treatments that a licensed physician has deemed medically necessary is abhorrent and should be criminal. No one should go broke because they get sick, but also, no one should go broke because they or their child has the misfortune of having a chronic, long-term problem that requires continued outlay of money over time.
</rant>

So this has been a source of extreme stress to both of us and continues to be so, because apparently no one is able to answer even the most basic of questions. We have asked the new company multiple times what happens in 6 months after Dorrie blows through her $25,000 lifetime limit on “durable medical equipment”, a term which includes not just the rental of her ventilator, sat monitor, suction machine, and feeding pump (all of which are durable and should last for years), but also all of the disposable supplies that go with them. No one at MVP will give us a straight answer. Finally, after waiting for weeks, we got our benefits book in the mail, but I cannot make heads or tail of the doublespeak that passes for an explanation of what they will or will not pay for.

I am not encouraged after the horrific time we had just this past week trying to get one of her prescriptions re-authorized. We called in a refill and were told that the new insurance required prior authorization. The doctor tried to fax the insurance the info, they claimed they didn’t get it. Meanwhile, we are nearly out of our current supply. We finally get all this cleared up (after 7 days of daily calls to the pharmacy and the doctor’s office) only to find out that medicaid (the secondary insurance) now needs a re-authorization too. *insert swearing here*.

The doctor’s office seemed to think this was an error in billing on the pharmacy’s part — so we shall see.

It’s ridiculous that there are actual vocational programs to learn how to do medical billing. It should not be this complicated.

Posted: insurance drama, we interrupt this blog, wtf, people