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
29
December
2009
A while ago I had posted about my difficulties in finding a normal colored School Bus toy for Dorrie, and my disgust at the corresponding line of pink and purple toys which exhibited signs of race, gender and ability fail.
And of course this translates into the adult world in the form of pink tools with less parts for the same money, overpriced toiletries in prettier packaging than the same items sold to men and so forth. But the latest idea from China just left me speechless.
The women-only car park in Shijiazhuang city is also painted in pink and light purple to appeal to female tastes.
Posted: we interrupt this blog, wtf, people
12
October
2009
They are often making us look bad, with their many weeks of vacation and low-cost health care.
This story from a UK source is really interesting. I saw a blurb about it on Slate and was skeptical (sceptical?), but if the reporting is accurate, Europe once again makes us look bad. We get Jenny McCarthy and the anti-vaccine hysterics, and they get this guy.
Posted: tales of interest, we interrupt this blog
12
September
2009
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
15
December
2008
The middle of last week was a balmy 60 degrees around here.
The next day, it started to rain, and the temperature dropped, and ICE arrived. Conditions deteriorated massively between about 9pm (when I got home from grocery shopping) and 11pm (when the nurse arrived at our house).
The power went out first around 11, and stayed out for about a half hour. Luckily, we had anticipated something of this nature, and had swapped Dorrie to the suction machine with the battery in it, so it was more or less charged. Our big vent battery was also charged. We disconnected her from the non-running humidifier and stuck an HME into her vent circuit. Another plus, we FINALLY got our equipment provider to switch us from the non AD/AN friendly O2 concentrator to liquid O2 just 10 days before all this happened. So our oxygen supply was not dependent upon electricity.
After the power came on and seemed as if it was going to stay on, I went to bed, and managed to sleep through the next outage, which lasted from about 2am – 6:30am. Bob had the foresight to begin recharging the vent battery directly it came on, so when the power went down once more at 9:30am, it was mostly ready to go again.
The power company couldn’t predict how long it would be before we got our power back, so we were trying to figure out what to do exactly if it should stay off too long. Obviously staying at home is the preference — hospitals have sick people in them and we have not had great experiences with the one in town anyway. But reports suggested that most of the northern part of town had power, so getting a room in a hotel and sneaking Dorrie in was an option.
Happily, PSNH restored our power by about 1:20pm on Friday and it has been up since then, so we never had to pick where to go. We are on the priority list with them, but there’s also a fire station just down the road, so we may well be on the circuit with them too. We’re also fortunate in that we live in a densely packed area which is right next to the highway — there are trees around but not so many as in some parts of town, and the roads tend to be kept pretty clear. As I’m writing this though, there are still over 15,000 people in town who don’t have power back, and over 150,000 in the state! It looks like power at my mom’s house didn’t come back on until some time today (she had already planned to spend the weekend here) as all of her food in her fridge was still warm when she got home this afternoon. PSNH has a twitter feed that actually appears to have someone reading it and responding to peoples’ questions.
Posted: we interrupt this blog
4
December
2008
When Dorrie was born, there were quite a few other small babies who joined us in the ICN around the same time. Most were 27, 28 weekers with uncomplicated courses (comparitively) who spent some time on CPAP and then nasal cannula and were soon just in the ICN to grow and learn to eat. There were two babies, though, one a 25 weeker and one a 24 weeker, whose parents we would talk to and who had a pretty rough course of it. The 25 weeker eventually transferred back to a hospital closer to her parents’ home and unfortunately passed away last April. We received some more sad news a couple of weeks ago. This was originally published in the Manchester Union Leader, but I copy the text here since obituaries don’t stay up for very long.
Andrew-John “A.J.” St. Jean
SWANZEY — A.J. (Andrew-John W.) St. Jean, 15 months, son of John M. and Bridgette K. (Munday) St. Jean, died Oct. 30, 2008, at Dartmouth-Hitchcock Medical Center, Lebanon, after a long illness.
He was born July 22, 2007, in Lebanon.
He loved his family and loved to be with people. He had made many friendships over his short life and was loved by all of those who met him. He loved to smile and flirt with those around him.
Besides his parents of Swanzey, family members include a sister, Bella C. St. Jean of Swanzey; his paternal grandparents, Francis and Carole St. Jean of Hooksett; his maternal grandmother, Priscilla Favreau of Manchester; his maternal grandfather and step-grandmother, Ronald and Virginia Munday of Seabrook; and many aunts, uncles and cousins.
He is also survived by his special extended family at the Dartmouth-Hitchcock Medical Center in Lebanon, where he spent many months.
Memorial contributions may be made CHaD Program, Dartmouth-Hitchcock Medical Center, One Medical Center Way, Lebanon 03766 or to David’s House, 460 Mt. Support Road, PO Box 660, Lebanon 03766.
He was a strong little guy, and he fought hard for a long time.
Posted: we interrupt this blog
4
November
2008
And thank heavens we DID.
Posted: we interrupt this blog
31
October
2008
I have Adobe Flash Player installed on this browser.
I play Flash games all the time.
So why the hell does Flickr force me to re-install it every single damn time I try to upload photos to their site?!
Grar.
Posted: we interrupt this blog
15
October
2008
It’s been a while since Dorrie has done anything truly scary, but last week she decided to prove she can still pull it off.
We have been finding lately that changing her trach tube has gotten more and more difficult — getting the old tube out has taken more pulling, and getting the new tube in has taken more pushing. As a result, Dorrie has tended to desat a bit while we are trying to get the new tube in, but generally it has not not too bad. Well, not last week: even though the change did not seem to take any longer than usual, she desatted dramatically, stopped breathing, and went totally limp (although I am not exactly sure of the order). Thankfully, we got the tube in, and we were able to bring her out of her spell by me switching the ventilator to give her automatic breaths (and pushing the button for manual breaths too, since I found that button first) while Mom did some vigorous stimulation. Dorrie was a little out of it at first when she came around, and her heart rate was elevated for a little while afterward, but she recovered pretty quickly and seemed perfectly normal again after that.
Not so for Mom and Dad, of course. We were badly shaken, I think because we had gotten used to Dorrie not having this problem any more. We were a bit divided on what exactly went wrong: my theory was that we had not let Dorrie spend enough time on elevated oxygen beforehand to let her build up a good reserve, while Mom believed it was one of Dorrie’s classic laryngospasm spells. So, we called the hospital to talk to someone, and their opinion (I can’t remember if it was Dr. Optimist or the nurse) thought it could have been a combination of the two, or possibly that she had passed out from pain during the procedure. (Not a happy thought either.)
What we ended up doing was packing Dorrie up the next day and heading up to Lebanon so that the neonatologist could have a look at her (and draw blood for some labs while we were there), and then the otolaryngolist could check out her stoma and see if there were any reason we were having so much trouble.
Dorrie was acting perfectly normally, so the neonatologist did not have any concerns about her episode, although she did express a little concern that Dorrie’s motor skills were not as developed as she thought they should be, so she made sure she took enough blood to test for a few things. (Some of those tests came back, and everything seems normal so far.) Then it was off to the otolaryngolist, who first checked with an endoscope, and he didn’t see anything wrong (mainly he was concerned there might be granulated tissue above the stoma causing a problem). Then he tried taking the tube out and putting it back in, and he didn’t feel there was anything wrong there either. His final opinion was that the stoma had healed to the point where it is basically the size of the tube that is normally in place, which meant that when we tried to push or pull the cuff part of the tube — which is wider — past the stoma, there was more resistance. We also learned that our technique for putting the tube in was probably making it harder for us: he showed us a grip we could use that made it much easier to control the tube as it goes in, and I think that will help a lot.
Well, the proof will come Thursday next week, when we change the tube again. Normally we change the tube every week, but everyone agreed we could take a week off, because next week, the nurse from Lebanon will be visiting us, so she can help out and be there as backup in case we need it.
Posted: we interrupt this blog
20
June
2008
If you’re not planning on buying Dorrie anything for her birthday, and by no means is anyone obligated to do so, you can safely ignore this message.
If you do want to get her a gift, Dorrie will not turn it down. She’s greedy that way. But for some categories of gift she has some slightly specific requirements, so I thought it might be a good idea to list them.
Clothing: Dorrie is currently wearing the size of 6-9M, and she is starting to fill those out pretty well. Please do not get her anything smaller than 9-12M, and if you’re looking at something for the winter, adjust upward appropriately. Thus far she has stuck pretty well to her adjusted age in sizes, so you can use her due date of 11/3 to figure out how old she will be at a given time.
In addition, please avoid the combination of zippers and feet when making purchases of clothing. Dorrie has a lot of tubes and wires and they cannot come out a zippered and footed outfit. Her legs are a bit shorter than the rest of her, but her bottom is big, so buying pants in a size smaller doesn’t work out very well. For that reason dresses and suits with no or short legs will fit her best.
Dorrie is a very hot baby. She gets overheated very easily if she’s put into those lovely plush sleepers that are so tempting and cute.
Toys: If there’s interest, I can make an Amazon wish list, but otherwise I think babies are easy to shop for in terms of toys.
Books: We love books. If you think we might already have a book, you can ask me (or see above re: wish list)
Posted: we interrupt this blog