10
June
2011
I mentioned a while ago that I had asked Dorrie’s PT for suggestions of equipment that might not have any theraputic benefit, but which would be fun for her to play on. Eventually, after looking through a bunch of special needs catalogs, we both thought that the Tumbleforms JettMobile might be something Dorrie could use.
So we asked Dorrie’s DME vendor if they could bring one over so we could try it out. They cost about $600 so we certainly didn’t want to order one without seeing how she looked on it. They weren’t sure they could, but our sales rep managed to wrangle one for a couple of days from a teacher she knows, and brought over so we could have a look.
Dorrie thought it was pretty cool, and more importantly, in spite of the awkward looking setup, it looks to us like she really will be able to use it to push around on the floor and be more mobile than she has been pushing herself around on her back. It will hopefully also spare her poor ear, which tends to look pretty red after a day of sliding around on it.
So the next step was to contact our area agency (an organization that provides support services for people with special needs and their families. I believe at least partially funded by state money but I’m not entirely sure how that works) and see if they had any funding we could access to help pay for it. Normally we’d go through Dorrie’s insurance for this, but she already has a mobility device (her chair) and everyone was in agreement that they wouldn’t authorize it. Since we’re going to need another chair within the next year or two, we didn’t want to risk jeopardizing the future funding for that. In any case, we submitted our quick application and a couple of weeks later they came back and said they would cover part! (Now we might be able to afford a swing, too!) So we went ahead and ordered… haven’t heard yet when it’s expected in, but we’re all very excited.
Posted: insurance drama, moving forward... or not, our little witch
3
June
2011
Back in February, we began attempting to make an appointment for Dorrie to have an adaptive communication evaluation with the state agency that’s supposed to assist the schools with equipment. There was a lot of bureaucratic red tape, of course, and we were told at the time that the waiting list to get the eval was 3-4 months long.
We were not best pleased, but we sent in the forms we were supposed to fill out and assumed they’d eventually get back to us with a date. Things were busy and time passed and suddenly we realized it had been 3 months and we’d heard nothing from them. So first our SLP from the school called, and by her reports they were very unhelpful until she called a second time and was more aggressive. They began giving her some song and dance about a missing form.
So we called to demand an explanation — were we supposed to psychically know there was a form missing? — and got a different story. Apparently our info had been passed to the billing department, where the billing department determined that our primary insurance would not pay for the eval, and that medicaid needed a form signed by our doctor before they would do so. And then… they did nothing at all. Because apparently our doctor is psychic too!
They at least admitted it was all their fault, though I wonder if they would have been so up front with this had the involved billing person not left for another job in the interim.
So things finally got moving again and after some scheduling confusing we finally got an appointment for an OT evaluation on June 1st. Apparently this was a required preliminary to the actual communication evaluation, which we weren’t aware of, but whatever. Additional information is always good.
The woman who came out was very nice and brought an iPad for Dorrie to play with, as well as a few switches. She also made use of the switches we already had here from the school. Dorrie was in a good mood (surprisingly — at the same time and not two feet away, workmen were busy demolishing our kitchen so we could get new cabinets.) and very agreeable to playing with the different apps and switches. She did a surprisingly great job at using her fingers as fingers and not as a big unit to hit things.
We’re supposed to get the results of this eval as a report and they’ll call us to make an appointment for the second eval with the speech therapist.
Posted: insurance drama, our little witch, schoolhouse rock, wtf, people
19
March
2011
This has been big news in the world of premature births, but I’m finding that even though it was reported in the mainstream, it hasn’t made as much of a splash as it could have.
The backstory:
For more than 30 years, it has been felt that progesterone supplements for some pregnant women might help prevent premature labor. The practice was never as widespread as it could have been, probably due to a number of high-profile cases where other drugs were given to pregnant women with terrible results. (See: DES, thalidomide). But this treatment has picked up in recent years, and there are now actual studies that prove that P17 shots given from roughly week 16-34 can reduce the incidence of preterm labor. These shots, made up by compounding pharmacies, are extremely cheap – about $10 – $20 apiece, and since they only need to be given once a week, the total cost per pregnancy is about $200.
Cost effective and medically effective — a great combination.
And an opportunity for mega profits, apparently. The company KV Pharmaceuticals, which has a pretty shady record, acquired a company which was working on a commercial version of this drug and got it fast-tracked through FDA approval. The FDA in its infinite wisdom decided to grant KV exclusive rights to distribute the drug in the US for the next 7 years. KV promptly issued C&D orders to all compounding pharmacies creating the cheap version of P17 shots and declared that from now on everyone must buy from them at a cost of $1500 per shot.
Their rationale? The average preterm birth costs $50,000, so to prevent it at the cost of a mere $30,000 is saving money! Of course, at that price, insurance companies will have to be very strict about who gets approved for this drug (meaning you’ll have to have ALREADY experienced pre-term labor in a prior pregnancy before they’ll pay), and I’d be hard pressed to find anyone who has $30k just lying around to pay for this out of pocket. KV, of course, claims no one who needs the drug will fail to get it due to finances, but that is complete BS. At $200 it was inexpensive enough to be used as a preventative measure in marginal cases where the PTL risk was unclear; at $30000 there’s no way that’s going to happen.
Posted: insurance drama, wtf, people
25
October
2010
I see it’s been more than a month since I posted here. Bad me.
Well, let’s see.
Not too long after I last posted, I came down with a cold. It was an odd sort of cold — I could tell I was getting sick for almost 3 days before it really got awful. We went into our usual sickness mode, where the sick person is isolated from the rest of the house in hopes of sparing everyone else the illness. I spent from Tues night – Saturday morning in our bedroom with only a wee bit of time out (mostly on Thu, when Bob had to go to work to deal with a meeting he couldn’t miss). By Saturday I’d gotten worse and was coming through the other side, so I went back to work and we resumed normal operations, mostly.
By Tuesday, Bob decided he was getting sick in spite of all our precautions. Turnabout was fair play, so he retreated to our room and I took over downstairs. The illness took a slightly different course with him, and seemed to linger longer. And even more unfortunately, it was clear by the end of that week that Dorrie had picked up something as well. We had an appointment up at DHMC on Friday anyway, so we (me and the nurse) took Dorrie up so everyone there could have a look at her. The verdict: her lungs sounded clear, but one ear was possibly red, so we came away with an Rx for amoxicillin which we were to fill only if she seemed to be sick.
Sunday she was really fussy and angry, especially while trying to sleep; even though we had a nurse, I ended up sleeping with her most of the night to keep her calmed down. We called in sick to school on Monday, Tuesday’s teacher tends not to show up half the time anyway (she didn’t this week either) and by Wed she was still a bit subdued but clearly recovering. So while stressful, we were fortunate to get through the cold with just a few nights of poor sleep and four days in a row of pukies. (We put her on reduced feeds for the rest of the week after that.)
Once she was better, we had an amazing run of 17 puke free days!!
As a reward, we’ve started trialling hemp milk and honey as potential new sources of calories.
School is continuing pretty well, though it’s been a rare week when some teacher/therapist or another hasn’t needed to reschedule. We also started private PT again last week, after literally months of trying to get it properly approved. I’m still holding my breath in expectation that someone’s going to send us a bill for it.
And speaking of something that’s taken literally months of wrangling to get finished, the RAMP was finally installed a week and a half ago!! Of course, it’s now the rainy cold season here, so we probably won’t get a whole lot of use out of it until spring, but as long as the idiot snowplow guys don’t break it over the winter, we’re good to go.
(Note: The windows in these pictures are not ours. Unfortunately the configuration of our townhouse means that literally the only logical place to put the thing required it to snake down in front of someone else’s unit.)
On deck for this week: our furnace guys are coming to install the optional humidifier so hopefully the air in our house won’t be so dry this winter. We’ll see if that improves Dorrie’s suctions when she’s off the vent. And maybe my dry skin… but if I had to pick, I’d vote for the former.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
15
September
2010
Time for another disjointed, rambly post!
* * *
I had been kind of delaying this post because we finally finally had a date when they were supposed to install our wheelchair ramp. But they called today and the parts haven’t come in yet, so tomorrow is probably off. I’m really bummed. The weather the past two weeks has been beautiful and though we’ve taken Dorrie out on the deck a few times, it would really be nice to get her in her chair and go for a walk.
* * *
After her couple weeks of vacation, Dorrie ‘started’ school again the week before Labor Day. I say started, but we only had one visit that week, a combined OT/SLP visit. The next week was short again, but we managed to get in everyone except the TOD who randomly did not show up.
This week so far (2 days out of 5) everyone has arrived when they were supposed to, though the TOD (who, I must mention, chose her own date and time to visit) announced that this time was really bad for her and she needed to pick another one. Umm. Why did you pick a time that was bad for you?! She wanted to come on Monday ahead of OT; I tried to explain to her multiple times that while Dorrie is fine with two sessions in a day, they cannot be one after the other like that. She needs a break in the middle. In any case, right now I have no real idea when she’s going to come next week, so I’ll have to try and find out later this week.
* * *
So far D has been doing okay with school. She was quite happy and participatory last week, but so far this week has not been at all interested in paying attention in class. She just frowns and stares at the toys, but doesn’t really seem like she wants to play with them.
Then as soon as the teacher leaves she’s a crazy girl, scooting all over the floor, playing with all her toys and having fits of giggles.
She’s a mystery.
* * *
After some confusion with Medicaid it looks like all we have to do is fill out some kind of form to get some extra PT. Fingers crossed we should have this squared away soon. Of course, it would be easier had they actually sent the form last time along with the list of providers, but we all know it’s insurers who are conspiring to keep the USPS afloat in these hard times.
* * *
Dorrie’s been doing great off of oxygen so far during the day. Over the weekend we ran out of HMEs with no oxygen port (and after being asked for more, our DME managed to send us even more of the kind with the oxygen port, gah), so she spent most of Sunday and Monday with her passy-muir valve on. I like it, because she has an easier time making sounds with it, plus she doesn’t need suctioning. But I also don’t like it because it doesn’t seem as well filtered as the HMEs. I’m always worried a hair or a bit of fluff will go into it. Which is why I’m reluctant to let her wear it anywhere outside the house — we usually stick with our HME/suction setup then.
Some days it seems like her poor toes need a rest from the oxygen sensor, so we leave her on oxygen those days and take off the probe. She likes that too, because bare feet are fun and have much more traction.
* * *
She’s been making a tiny bit of progress in some areas. I really do think she’s getting better with her arm; it’s clear enough that she now does understand that hitting her toys is what makes them go, and she’ll repeatedly smack her toys so that they keep playing music/flashing lights/wobbling back and forth. She also shows a definite interest in specific toys that may be out of her reach.
When she’s in an especially good mood, she laughs like crazy. She’s getting better at it: a lot of the time now you can hear her laughing.
She’s always been good at getting her bottom in the air (moreso than her top), but lately she really gets her knees pretty far under her hips. If she could lift her head at all, she’d be ready to crawl. Neither Bob nor I are really sure what to do to help her there. We try to encourage her and help her work on her strength, but so far I can’t say that we’ve seen much of an improvement in head control.
She’s much less fearful lately than she used to be. There was a period a few months ago where almost anything sent her into a panic, her arms and legs flung out like a starfish, her face frozen in horror and her voice making little whimpering noises. But I almost never see her do that now, unless there’s really some reason for it. She’s still a huge non-fan of anything crumb-like, and will gag and retch if one gets into her mouth. But she has gotten over her intense fear of anything not plastic flavored, and has been happily chewing on prunes and licking spoons of hot fudge.
* * *
Speaking of less fearful behavior, she behaved brilliantly at the cardiologist a couple of weeks ago. Last year, she was completely terrified and freaked out when she had to lie on the bed and the ultrasound wand touched her chest. She only calmed down after we put a Fraggle Rock DVD into the tv they had in the room for just such a purpose. So this year we came prepared and I brought along one of her Sesame Street DVDs to watch. But we didn’t even need it! She was instead absolutely fascinated by the ultrasound machine and watched very closely as the echo proceeded. She even had to get an EKG, and though she was not a fan of the little alligator clips, she only made minimal protest. Grammy, who was with me at the appointment, was incredibly impressed and so was I (and so was the ultrasound tech because I think she remembered last year and the year before).
The cardiologist was impressed as well, but mostly with the results! We’ve dropped captopril from our med regimen and dropped cardiology from our list of people to see. He’ll remain on deck if she has an illness, but we’re otherwise released (caveat: assuming her BP is still good when we have it retested at the start of October.)
Posted: insurance drama, moving forward... or not, our little witch, tales of interest, trying to stay healthy
26
August
2010
I keep noticing that we haven’t updated here in a while, and thinking about what to write, but then I’ll remember I didn’t upload any pictures yet and the minimal amount of effort that would take just causes me to put it off again.
But now it has been nearly a month!
Still no pictures (they exist, but not online yet, unless you happen to be Facebook friends with my mom). I can’t let that stop me forever, though.
So the first half of the month was pretty unremarkable. I can’t really think of anything to report from it with respect to Miss D.
* * *
Summer school ended a couple of weeks ago, and the regular term will begin next week. In the meantime it has been very quiet here with no therapy at all. It was a nice break, but we’ve decided to see if we can manage to get some private PT on top of the school provided stuff. It all seems to hinge on whether or not our PT from EI is on medicaid’s approved providers list. We await the answer to this million dollar question whenever medicaid decides to get back to us as they’ve promised to do. (Or we give up on this and call them again.) Why medicaid? Well, because our super awesome primary insurance does not cover PT at all except for “acute” cases, which D would not be.
Meanwhile, we are still in the process of attempting to get a wheelchair ramp outside of the townhouse. The condo association approved this back in June and the intervening time has been spent trying to get the service coordinator from our Area Agency to actually return our calls. We have finally hit upon the solution that he seems to answer his phone if you call him right when he arrives at work, so some slight forward progress has been made in the past couple of weeks. I estimate that the ramp should be ready just in time for the first snowstorm.
* * *
This summer Dorrie has made some significant progress at weaning. She is now completely off of supplemental oxygen for much of the day. I’d like to say that her continued progress towards being a ‘wireless’ baby has made us more mobile and free, and to a certain small extent it has, but it has also made something quite clear to me which I was obviously blocking out. All along I’ve been telling myself that our lack of activity and ‘getting out’ has been related to the difficulty of transporting Dorrie and all of her equipment. As the equipment becomes less of an issue, I now know this is not true at all.
In fact, we have ended up like this because of her vomiting issues. Practically our whole day revolves around her feedings and the adaptations we’ve made to prevent her from throwing up. We are very successful at this! Since we eliminated the goat kefir from her diet, we’re back to our blissful 1-2 pukes a week schedule. But this comes at a cost: moving her around with a full stomach is completely a no go. She can play on the floor, but it’s risky to pick her up before an hour has passed, and forget about a car seat for at least two. Since she has 4 meals a day spaced at least 2.5h apart and is awake (or napping — g-tube means she can eat when she naps) generally for 11-14 hours, you can see how this severely limits the time available to do anything!
I’m honestly not sure what to do about it, however. We could attempt to condense her calories into 3 meals instead of 4, opening up more time between the meals. This is probably theoretically possible, but her liquid volume is pretty good right now and I’m not sure I want to mess with it in that fashion. Letting her puke more isn’t really an option. I guess our best hope is to just keep waiting and hope that over time it won’t be as necessary to be so hyper vigilant. Things have improved tremendously; before, even with all of the vigilance we were still getting meals returned every day.
* * *
Sunday the 22nd marked the first time Dorrie actually laughed at something I said. We were watching the Food Truck Race on Food Network, and the preview showed the teams getting handed giant slabs of unbutchered meat. So naturally I pointed this out to D by saying ‘mooooooooo’. She found this absolutely hilarious and continued to laugh each time I said ‘mooooooo’ for quite some time after that. She was actually sitting in my lap at the time and facing away from me, so I know she wasn’t just responding to my face.
The joke was no longer funny by the next morning and she hasn’t responded like that again to anything else (yet). Auditory Dissynchrony/neuropathy is such a sucky diagnosis. It really tells you absolutely nothing about what she can and cannot hear and is and is not hearing. Communication is a big problem.
* * *
We took advantage of school vacation to make a visit to Grammy’s on Tuesday. It sounds less complicated than it was, unfortunately. Last fall we sold our second car, since with nursing being what it was and D being what she is, we can’t really ever leave the house at the same time unless she’s with us. Plus, though Dorrie hasn’t done anything really scary for quite a while, I still wouldn’t feel comfortable driving with her alone in the back seat. She often needs to be suctioned and sometimes needs to be reminded to keep her head from slumping forward.
So after Bob went to work, Grammy came over and got us in her car and we three drove back to her place. We stopped for a bit where she works so she could introduce D to the people there. Dorrie was highly suspicious, since Grammy works in a doctor’s office! It took her quite a while to relax, and she didn’t really completely do so until we came out of the office and got back into the car. Then she was grinning from ear to ear.
Unlike at Christmas, this time she had no issues with Grammy’s house at all and settled down on the floor to scoot around and play with the toys we brought. We had plenty of time there, since we had to feed her and then sit around for quite a while for it to be ‘safe’ for us to get her back into the car. We managed to make it back home without any puke incidents; D even fell asleep for about half of the ride, which she is usually reluctant to do.
Posted: insurance drama, moving forward... or not, our little witch, schoolhouse rock
18
July
2010
It’s hard to believe that a mere 10 or 20 seconds after these pictures were taken, she decided to throw up all over herself and me (as chronicled here). Before that minor disaster, she seemed to enjoy the bed very much. Here’s hoping she likes it again once she’s expected to sleep in it.
In continuing with our rearrangement, we’ve finally moved Dorrie’s rocking chair up to her room rather than having its purple gingham gracing our living room. We bought a new recliner to replace it (otherwise there’d be no real place for people to sit besides the couch). Dorrie approves of the new chair.
The recliner wasn’t the only new chair to arrive this week. A few months ago, we had ordered a bath chair. MVP naturally denied the claim and it was sent along to medicaid. Medicaid is currently in a mess due to the discontinuation of some federal funds the state had been expecting, and one of the emergency cost cutting measures they had implemented was to pay DME companies cost + 10% of items rather than cost + 30% as they had been. The DME companies were in an uproar as a result, as the new repayment scheme didn’t actually cover their overhead, and quite a lot of equipment wasn’t able to be ordered. After general outrage at disabled little kids not getting wheelchairs, the state backtracked and restored the funding to normal. We knew Dorrie’s bath chair had been caught up in this mess, but we were still trying to find out if it had been ordered when it was suddenly sitting on our porch one night at 9pm when I came home from work.
Dorrie still isn’t sure what to think about it, but I think she won’t have too much trouble getting accustomed to it once we can actually use it for her baths.
Last, a bonus picture: casual Dorrie.
Posted: insurance drama, moving forward... or not, our little witch
22
March
2010
The House managed to pass the Senate’s version of the reform bill tonight. After more than a year of dickering and whining and misinformation and flat out lies, there’s finally a tiny bit of reform.
Of course, most of the changes aren’t going to go into effect until 2014. Why? Because doing something 4 years from now is less scary than doing it now. Or something.
But three very important measures come into effect just 6 months from now.
(This is from CBS’s site, but this isn’t exactly a new bill so I’m reasonably sure it’s accurate)
6. NO DISCRIMINATON AGAINST CHILDREN WITH PRE-EXISTING CONDITIONS– Prohibits health plans from denying coverage to children with pre-existing conditions. Effective 6 months after enactment. (Beginning in 2014, this prohibition would apply to all persons.)
7. BANS LIFETIME LIMITS ON COVERAGE– Prohibits health plans from placing lifetime caps on coverage. Effective 6 months after enactment.
8. BANS RESTRICTIVE ANNUAL LIMITS ON COVERAGE– Tightly restricts new plans’ use of annual limits to ensure access to needed care. These tight restrictions will be defined by HHS. Effective 6 months after enactment. (Beginning in 2014, the use of any annual limits would be prohibited for all plans.)
YES YES YES. All of these things impact Dorrie right now, and make it far less likely that we will end up bankrupt at some point in the future.
No matter what FoxNews and everyone else would have you believe, health care reform is a GOOD thing.
Posted: insurance drama, we interrupt this blog
14
November
2009
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
Posted: insurance drama, our little witch
14
November
2009
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.
Posted: insurance drama, wtf, people
