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
15
March
2010
We finally got a scale that actually seems to work and so were able to get an approximate weight on Miss D for the first time in months. She now weighs somewhere between 27 and 28lbs. We haven’t measured her yet, but if she measures the same as before, I have to assume that she’s somehow managing to bend space around her body, because her pants are definitely shorter on her legs.
The wean off the vent continues, and she’s now up to 9-10 hours a day off. (And we’ve done 11 a few times due to mummy or daddy losing track of time at the end of the day).
It’s not clear what the time change is going to mean for her sleeping schedule. It’s been all over the map this past week. She mostly still manages to get herself 10-12h/day of sleep, but the schedule remains less than ideal.
She’s really improved control of her arms a great deal over the last 6 months or so, and can now usually get her hands just about where she wants them to be. But she still has pretty much no fine motor control — once the hand in there she can’t really hold on to anything or press/push something on purpose. She can smack things and often that’s enough to trigger a toy, which makes her very happy.
Head control, according to the PT, has improved a bit, but not to the point where the difference is obvious or really a useful amount. As much hope as I’ve had to let go in regards to other things, I just can’t let go of the hope that she’s going to be able to hold her own head up. It would open up the door to so many things if she could.
She’s a very happy girl still, most of the time, and has great powers of concentration. She can focus on a toy and interact with it for quite a long period of time without getting bored. Though she still likes to put most of her toys in her mouth, she’s less determined that this should be the only way in which she plays with them, and will go for quite a while without trying to bite or lick anything.
With the vent on, she can make lots of noises and is often very ‘chatty’. This is especially the case when she’s tired, but she will ‘tell’ us when she needs a diaper change as well.
Tomorrow we head up to the hospital for appointments. First visits since October. We’re probably leaving the vent at home (!).
Posted: our little witch
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