So once again the ranting part of the post got far too long. The pictures are in this one instead.
In disguise as mommy
That didn’t work
With Uncle Jonathan
Playing with puppy
Such cute hair. And a tree!
Definitely ready to be done posing
Not sure why her nose is yellow so often in pictures. It’s not really that yellow compared to the rest of her face, and I can’t imagine why it would be.
No, by the grace of Miss Piggy, we don’t have it.
Around the middle of October, we started to hear tell of kids in other states getting vaccinated, but no matter who we called in NH, no one ever had any. Then we heard tell from Grammy of non-essential hospital personnel getting it in her area (aka some of her friends — people in the wrong age group and with no patient contact). We started calling potential sources more frequently after that, and eventually, the week of October 19th, we heard that some shots had arrived up north, where our specialists are. But neither they nor we wanted to risk bringing Dorrie to the hospital, and they thought for sure that our ped would have them the next week. Our ped’s office insisted this was not the case, but I thought maybe the hospital might have some insider information no one else was privy to. Reluctantly, I tried to stop myself from trying to plan ways to drive ourselves up there to get the vaccine.
Then, suddenly, everyone changed their mind. Why? Did our incessant badgering finally get results? Did the fact that someone from the hospital actually talked to the nurse at the ped’s office finally make their assertion that they had no vaccine real? I have no idea. But somehow, what had been on Friday ‘wait until the ped’s office get some’ became on Monday ‘the nurse will drive down with a dose and give it to Dorrie on Wed’.
First shot acquired and given, check. I tried to stop thinking about it, figuring that by the time she was due for her second shot, there would be more supply and we could worry about it then.
Sure enough, mid-November, the ped’s office called to tell us that they were finally going to get some vaccine in and did we want any? Hell yes, I said, and noted to the woman on the phone that Dorrie had actually gotten her first dose on 10/28, so if we went by the minimum three weeks in between shots, she could get her second dose on 11/18. And could we just have our home nurse go by the office and pick it up and give it? She left and (I assumed) went to relay all this information to the doctor. She returned to the phone to say this was fine and we could come pick up the shot on Wed morning.
Wed morning rolls around and the nurse heads over to pick up the shot. Except once there, they are happy to hand over the vaccine. But what they won’t do is actually provide her with the order that allows her to give it. Why? Because even though every single piece of vaccination guidance states that the second shot can be given after 21 days, their office policy is 30 days or bust.
The nurse very wisely took the shot (possession is 9/10ths of the law!) and came back to report this latest idiocy. We put the dose in the fridge and began calling people again. But we couldn’t get anyone to sign off on it, so in the fridge the shot remained over the weekend. On Monday we tried calling again and still the ped was being recalcitrant. At this point we were getting irritated — they were saying they wouldn’t even give the order for the next Wed (the day before Thanksgiving), because that was only 28 days and not 30. (Because somehow the terms ‘month’ and ‘four weeks’ became equivalent in their heads.) Because of the holiday, we had no nursing coverage after Wed, so that would essentially mean putting off the shot for nearly a whole extra week.
Fortunately, once again persistence and nagging paid off. More calls on Tuesday eventually produced the desired result. Someone decreed from on high that bending office policy to follow state guidelines might not be the end of the world and we finally got our order to give the dose at 28 days. So now, theoretically, as long as Miss D remains swine flu free for the next couple of weeks, she should be pretty well covered.
We just have to figure out where and when to get Bob and I some vaccine.
Please do read the latest insurance saga below, if only to see a concrete example of the kind of mess private companies have made of complex health care. Honestly, for healthy people, it’s not going to make much of a difference if the health care system is private or public: no one is suggesting physicals and routine things like that will be eliminated. Where the streamlining and improvement will be is in chronic, long-term care. These are the cases that sap profits, because they aren’t one shot deals, they are continuing bills over an indefinite period of time. And these are exactly the cases that private companies try desperately to avoid, by using every trick in their arsenal to get out of paying and dump the costs onto families who are already stretched to the limit trying to coordinate care through five or six different organizations on top of dealing with a medically complex relative.
But also, some pictures I uploaded shortly after Bob’s last post, but then didn’t ever share here.
Ooh. A new shiny toy!
Head Butt!
Go me, I knocked it over!
Let’s try that again
Hey, there’s a phone, too
So as mentioned a couple of months ago, our primary insurance changed at the beginning of September.
Fairly shortly after that, I got (several) letters in the mail from our new insurer MVP. These stated that Dorrie’s ventilator, oxygen and respiratory supplies had been authorized for one year. Presumably next year they will decide again if she’s allowed to keep breathing.
I never got any letters stating her enteral feeding supplies had been approved, but though this made me uneasy, we had updated our feeding supply company about the change in insurance, so when September and October passed without any incident, I put those feelings aside. As it turns out, this was not correct. At the beginning of the month, after two months of supplies had been delivered and were supposed to be billed to MVP, we got a call from our supplier telling us they’d just discovered that they were considered out of network and MVP would not pay them for the supplies.
AUGH.
Two months worth of formula (32 cans at $37/can), bags (60), feeding tube extensions (8), replacement G-tube button ($160), assorted syringes, feeding pump rental are easily $1500 and possibly more. We’re still at this point not sure if we’re going to have to cover these costs.
In any case, we called MVP and asked for the name of an in-network company we could use instead. They provided one, and we called them up. We gave them our list of supplies and after a couple days they came back with a reply: MVP would pay for the feeding pump rental and (presumably?) the g-tube button replacements, but they would not pay for the formula or the other ‘disposable’ supplies.
Clearly this was not acceptable! Fortunately, NH law states that the formula must be covered if we have a doctor’s order, something MVP was apparently aware of, since when we called them they didn’t seem to argue about it (though they also have yet to actually pay for any, so we’ll see). But they are still balking at paying for the other supplies. Why the hell would they pay for a feeding pump and g-tube if they won’t pay for the supplies that allow us to use it? Even the doctors are boggled, because these are all things we have an order for and they are clearly a medical necessity, necessary to sustain life. You may die slower than if you didn’t have oxygen but you still need food to live!
Anyhow, we sicced the doctor’s office on the insurance about the supplies, but we also called NH Medicaid, where Dorrie has secondary insurance due to her medical disabilities. They said that they will cover the disposable supplies if we cannot talk sense into MVP. So we called the new company back and told them to get going. Except. They then informed us that they do not work with medicaid for enteral feeding supplies.
AUGH.
So we called MVP back again and asked for another feeding supply company. We confirmed with this company that they do, in fact, work with both MVP and Medicaid. Of course, all of this song and dance took a whole extra week and we just asked the doctor to fax all the orders to the new company on Friday afternoon, something that will not actually occur until Monday. In the meantime, the original supply company needed their pump back, and UPS picked that up from us yesterday. Hopefully we will get our new pump from the new company before the end of next week. The old company has not yet collected their IV pole, but I am sure they will need to do that soon, and we are still arguing with our respiratory supply company about having them send us one (since mostly we need the pole for the vent and humidifier).
And then, on top of this.
After multiple faxes and phone calls, we managed, in September, to get Dorrie’s PPI Zegerid approved by MVP. Now, Medicaid has placed it on the list of drugs it will not cover, so if we want to continue using it, we’ll need to pay the co-pay. The end of the world? No, but still another pin-prick in a week full of stab wounds.
Dorrie was miraculously approved for Synagis for a third year (and yet they will not pay for feeding bags?). MVP contracts with a mail-order pharmacy to send this out, but they also told Dr Optimist’s office that they could just add Dorrie’s dose in to their general order and get it all at once from their usual supplier. This broke the brain of the mail-order pharmacy and they called us and the doctor’s office half a dozen times, utterly confused, trying to find out when and to whom they were supposed to send it.
So, in short: MVP, a company I had never heard of prior to September, now has commercials on tv every five seconds telling us how awesome they are. This is a BLATANT LIE. They have been nothing but a headache and their current refusal to cover medically necessary items may be ‘legal’, but is definitely unethical.