4
March
2010
I know I have spent a great deal of time in the past complaining about the nurses we’ve received.
It makes me sad, because the vast majority of nurses we had in the NICU (and especially Dorrie’s primaries and honorary primaries) were fabulous. Competant, reliable and trustworthy. I did not like having to leave her with them, but with only a very few exceptions, I did trust them (and the RTs and the NNPs and the doctors). Part of that was because I had to, but mostly it was because they had their act together. It was clear that they knew what they were doing.
Our first nurse when we came home post-trach, DramaNurse, was also pretty competant. All of her problems stemmed from her insane personal life; I didn’t have any fears about her ability to react and handle an emergency should it have arisen. Our original night nurse was wonderful — a combination of competant and responsible and not-insane that made me comfortable to be around her.
After DramaNurse left, we had a couple of very temporary nurses, one of whom we dismissed ourselves because we didn’t need her and one who came to orient and then fell off the face of the earth. Finally we got a more stable situation, AnnoyingNurse, who drove me absolutely bonkers but who obviously enjoyed playing with Dorrie and who Bob found tolerable. And so she stayed. After a while we rearranged my work schedule so I had to spend as little time with her as possible which improved things a good deal.
But she was still annoying. I decided that I would try not to write about her on the blog because I didn’t have anything nice to say, but she seemed like a very nice person — just one who grated on me. And she still did not project the air of ease and comfort that would have made me (both of us) feel able to leave Dorrie alone with her without Bob or I supervising. Since both our workplaces have been so accomodating, this wasn’t necessary, and so she remained.
Until last week. I am still not sure what exactly happened; the explanation we were given was entirely inadequate and did not fit the actual events. She came to work acting oddly, but not so oddly that I couldn’t pass it off as her usual irritating qualities. Then things got very very weird. The OT came and the nurse said she needed coffee, so I let her leave to go get some. Except she came back without any coffee. Puzzling. She said a few strange things and was acting bizarrely enough that the OT this week told me she had been very uncomfortable with the behavior she witnessed. Enough that she had considered calling the nursing agency and had spoken to someone at her work about it.
The OT left and the nurse began to make Dorrie’s lunch. It looked unmixed in the bottle when she brought it out and then she spilled a great deal of it trying to pour it into the bag for the pump. She wandered (and I do mean wandered) off to wash her hands off while I cleaned up the mess and actually got the feed started. I found that a lot of the food was still in the bottle and still more of it was left in the jars in the kitchen, as she had done a very poor job of getting the baby food out in the first place.
She returned and sat down on the mat next to Dorrie, saying nothing (unusual — she is a chatterbox). She sat there sort of patting Dorrie for a while while I watched getting more and more weirded out by her behavior. Eventually she decided to change Dorrie’s diaper. And here’s where the weird took a turn into freaky. She seemed to have lost the ability to control her hands. She pulled at the diaper tabs ineffectually for minutes, unable to figure out how to get them to close. Eventually, with the diaper still unfastened, she began to try and pull Dorrie’s pants back on. At that point I jumped in and fixed things, then asked Bob to come home. I didn’t know what to think. I asked her if she was okay and she was able to answer — she said she was fine. (Obviously untrue!). I thought she might have been having a stroke, but her speech was clear.
She began to try and read Dorrie a book and was stumbling through that when Bob came home. He had trouble getting her attention. At that point I was too freaked out and went upstairs for a couple minutes. Eventually, Bob and she decided that she would go home because she was worried about the ‘power being out’ (power had been lost in some neighboring towns). She managed to exit the house and make it to her car. It took her a while to get into the car, but once inside she didn’t seem to have trouble driving away. We were nervous about letting her drive and discussed if we should alert the police. In the end we didn’t, we just called the nursing agency.
In any case, after much discussion and the aforementioned inadequate explanation, she is no longer on our case. I’m pretty concerned that she’s still apparently working. There is absolutely no doubt in my mind that in the state she was in, she could never have replaced a trach and might not even have been able to fix a more minor problem like the circuit coming apart.
So now we will see what sort of new nurse we get.
Posted: nurse or no nurse, wtf, people
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
29
November
2009
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.
Posted: medical morons, our little witch, trying to stay healthy, wtf, people
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
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
2
August
2009
Two Mondays ago, the day after I got back from my jaunt to Pittsburgh, we had several big appointments up at DHMC. The most important, to my mind, was the eye checkup we’d been trying to get scheduled for, quite literally, a year. Because it was so difficult to schedule for reasons I still don’t entirely understand, our eye check, which should have been due in April (retina guy said to come back in a year), didn’t occur until July.
Fortunately, we hadn’t seen anything to be concerned about with Dorrie’s vision — she tracks very well, she looks at things up close and far away, and her eyes seem to have corrected themselves to work together rather than allowing one to drift not quite with the other. The doctor confirmed that her eyes appeared as they were described in the report from last year, so in this case no change is good news. He asked us to come back in 6 months and we can figure out then if she needs some glasses or not. (Even without ROP to contend with, genetics says she’s going to have glasses eventually.)
The second big appointment was with Dr. Optimist, who agreed that we could start trach collar sprints. Unfortunately, her nurse was not there at the appointment with us and things got pretty screwed up in the transfer of information from the Doctor to the DME company. First, though the appointment was on Monday, they did not come out to bring the necessary equipment until Friday. Then, it wasn’t our normal RT who came, but a couple of complete dimwits. And finally, even though it had been a whole business week since we were at the hospital, the DME had not managed to get any written orders from the Doctor concerning the trials.
So, our normal RT and I have been talking about the upcoming trach collar sprints for months now, and she was well prepared and thinking about it. Unfortunately it seems that she’s left the company for greener pastures, so the aforementioned dimwit squad came on Friday. I could tell things were not going to go well when they hauled in the giant compression machine, and my fears were confirmed when Dimwit #1 actually asked ‘she’s not on oxygen, right?’. ‘Um, yeah she is’, said I, looking around at the 2 giant cannisters of liquid O2, half dozen mid-sized oxygen cylinders and one giant cylinder (M or E size)).
After the months of idiotic wrangling it took to get them to give us the silent liquid instead of the compressor, I can say I was less than thrilled to get this new piece of equipment that was just as loud if not louder. Ridiculous. I said as much, but given their lack of brain activity it’s not surprising that they had no suggestions. I also wanted to cry at the idea that not only did we have to deal with this new noisy thing, but that we would be even less mobile than before — this thing doesn’t have a battery nor does it attach to a pole, so it’s stationary even more than the vent is! I said as much, but they again didn’t have a response.
So I tried out their ill-concieved setup and it worked about as well as I expected (very poorly), while they looked over the vent. And proceeded to WIPE OUT THE SETTINGS. I was livid, especially as it emerged that they did not have the proper settings written down anywhere. It took more than a half an hour to figure out what they were supposed to be, while poor Miss Dorrie had to sit and breathe through the ambu-bag.
Finally, almost a week later, the head RT came back with slightly more reasonable equipment, and thanks to several people online I had a better idea of the different setups that were actually available (no thanks to them for telling us.) So once Dr Optimist and her crew are back from vacation on Monday, we can hopefully finally actually get started on this business, two weeks later than we wanted to.
The last appointment, which was actually the first one of the day, was with the audiologist. We had gotten molds taken weeks ago and Dorrie’s hearing aids were in so we could trial them. She predictably didn’t approve of having things stuck in her ears, but she got used to it remarkably quickly and she’s been willing to wear them for quite a long time every day. We usually end up only putting one in if she’s on her back, because of her tendency to smush one ear against the floor (which causes an aid to screech in protest). The aids themselves are so cute. Purple with purple glitter ear molds.
In the meantime, the stroller hasn’t come yet. Supposedly we’re waiting for a single part so I’m hoping desperately that we get it this week.
Dorrie also had her 2 year checkup at the Ped, but coming on the day right after all of this, it was pretty much an anti-climax.
We’ve also just added pears to the list of foods we’re trying out; so far we’re 50/50 – she kept them down fine yesterday but threw up today. It’ll be at least a week before we decide how she’s tolerating them.
I like this picture because she’s holding her head up so straight and tall.
She was watching me eat them with such intensity that I thought she might like a taste. She didn’t seem to mind.
Another pic with a clear view of one of the hearing aids.
Posted: hospital crack, medical morons, moving forward... or not, our little witch, wtf, people
14
March
2009
…not.
I believe I mentioned that our reliable night time nurse who I liked recently had to disappear for a while due to some kind of family emergency. She is still not back, but the nursing agency called at the beginning of the week to say that they had someone else who could do some nights, and she would be coming to orient on Thursday morning.
I’m sure you can all see where I’m going with this.
That’s right. She never showed up.
The agency claims they were notified, but if they were, why the hell didn’t they bother to call us?! We have had this discussion with them mutiple times in the past. We are not psychic. Perhaps we are also too trusting. When we’re told someone will be showing up to work, we are surprised when they fail to appear. This seems to be a less universal attitude than I would have expected…
Compounding the lack of nursing has been Dorrie’s horrid sleeping this past week. After a really good run of 4 or 5 days in a row week before last where she had a good nap during the day and was asleep by 9:30pm at night, from Sunday she has been refusing to nap more than about 20 minutes during the day. The problem? She’s still a baby who needs a nap. By the time we hit 6 or 7pm, she’s got so many bags under her eyes that it makes you yawn to just look at her. And quite a few times she just poops out on us. We’d be fine with that — if she stayed asleep for the rest of the night. Instead, she treats that as her nap, wakes up a little after 8 and is ready to party until dawn. Sunday night she went to sleep at 1:30am. Monday was midnight. Tuesday was 1am. And so on through the week until we hit tonight’s record of 1:45am. Bob thought it was the time change, but I don’t think that could have affected her nearly this much. I don’t see how one hour change could screw up her sleeping schedule to the tune of 4-5 hours.
Posted: nurse or no nurse, our little witch, wtf, people
7
March
2009
Quite a while go, we bought Dorrie a Fisher-Price people airpline for Christmas. Since she had been scared of large toys and had gotten so many other toys for Christmas anyway, we hadn’t given it to her until the middle of February. To our surprise, she didn’t just want to chew on the people, she wanted to play with the airplane.
So we promptly went on a hunt for other toys in the Little People line (digression: this line has been seriously revised since we were children, and NOT for the better; I hate the new people designs) which were similar. The one I wanted the most was the school bus, because I remembered spending quite a lot of time playing with the two buses we had when I was little.
But every store I went to only ever had the Pink Bus.
What is the Pink Bus? It is part of the idiotic idea that pervades the toy industry that requires all popular toy lines to have a separate sub-line “for girls” that consists of the same toys colored pink. There are pink legos, pink ring stackers, pink shape sorters, pink activity centers… sometimes I’m surprised that our medical supplier did not deliver a pink ventilator and oxygen tanks.
The pink toys are almost always vastly inferior to the other, regular toy line. They are less complicated, focus only on things like princesses and houses, and are less interesting to look at, since instead of using a large palette of colors, they tend to be pink with purple highlights.
The Little People pink toys are especially troubling. The pink toys I have seen so far contain no obviously male characters (several androgynous people were allowed to remain). The characters seem also to be predominantly white.
We finally managed to track down the regular school bus at Babies R Us yesterday. It was then that I discovered that the Pink Bus not only contains 3 white female characters rather than the more multicultural Regular Bus, but the Regular Bus contains a wheelchair which was omitted from the Pink Bus. Apparently little white girls do not associate with the handicapped?! I really wonder what kind of message Fisher-Price thinks it’s sending with all of these gender-segregated toys.
Posted: tales of interest, wtf, people