12
October
2009

Europe2

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.

5
October
2009

Um, duh?0

So, week or so ago, we suddenly noticed that Dorrie had a little bruise on her chin. It was quite a dark one and looked painful, but we couldn’t think when it had happened.

It was starting to fade when the following conversation occurred.

Nurse: I’ve figured out how she got that bruise on her chin!
Me: Oh, really?
Nurse: I was looking at it and it just came to me.
Me: Oh?
Nurse: I had been trying to figure it out for a while, I know the two of you have been watching it, too.
Me: We have. It seems a little lighter today.
Nurse: I think it does look like it’s getting better. It’s nice to know how she did it, though.
Me: Yes, how?
Nurse: When she was lifting her head up and putting it down, she must have banged her chin on something!
Me: *stares*

21
June
2009

Happy Father’s Day1

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Dorrie and her daddy get on famously, and I’m sure she knows she’s lucky to have such a dedicated and patient father who:

  • Saw her for at least a few minutes almost every single day for the 8.5 months she was in the hospital, even though said hospital was 100 miles from our home and his job.
  • Arranged his work schedule while she was in the hospital so he could spend some days working remotely, and has continued to work an unusual schedule mommy can keep her job now that we’re all at home.
  • Gets up almost every day at 2 or 3am so that he can take the second shift of watching her at night.
  • Does every other trach and circuit change so both he and mom keep in good practice for emergencies.
  • Handles most of the calls to insurance/equipment vendors/doctors/pharmacists.
  • Plays with her, reads her books, does exercises, and generally spoils her like the little princess she is.

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13
April
2009

Easter Update3

In news I’m sure everyone is tired of hearing about, the nursing problem continues unabated. After managing to show up for two whole nights in a row, the latest superreliable nurse dispatched from the agency called in both nights last week. I expect that means she’s gone for good, but we shall see if they continue to string us along with promises of her return.

The rest of the week has been pretty calm, and Easter was nice.  Dorrie was in the mood to perform, and spent quite a while lifting up her head to look at the mutant singing ducken brought by Grammy.  Then I went out to lunch with mom and my brothers while Bob stayed at home to watch her. We brought back food for him and Dorrie decided to scoot around on her back to investigate what was going on at the sofa.  She discovered that the sofa is surrounded by evil ceramic tile which does not feel nice to someone pushing herself around on her back.

The biggest negative to the day was Dorrie’s failure to take an adequate nap, which led to a meltdown, a pukey and finally a so sleepy baby who couldn’t stay awake until bedtime and instead slept from 6-9:30pm and then woke up again.

We also had a fun adventure with the ventilator! Since Dorrie was asleep at the usual time we get her ready for bed, I wasn’t able to change the vent circuit. As she was still up around 11:30pm, I decided to do it then and just get it over with. Bob had already gone to sleep, but we do it by ourselves often enough, so I didn’t figure it would be a big deal.  (I bet you think you know where I’m going with this, and perhaps you do, but bear with me anyway.)

The change itself went off without a hitch.  I fired up the vent again to run a leak test before reattaching Dorrie to it.  FAIL!  The worst failure I have seen yet, accompanied by a sort of sucking straw noise I was sure meant one of the hoses had a hole in it.  But I could not see one or feel air coming out, so I ran the test again and this time it passed.   This time I noticed that the bag of inhalation water that runs to the humidifier was not only empty, but that the leak test had caused the bag to inflate like a balloon.  Ha ha, I thought, how amusing.  I changed the water bag and got Dorrie hooked up.

Then the ventilator began to alarm. HW FAULT it said. WTF I said.

The vent manual, which had been hanging around the living room getting in everyone’s way for nearly a year, was suddenly nowhere to be found.  The vent seemed to be working fine. Dorrie’s sats were 100. WTF I said again. HW FAULT said the vent, then beeped some more.

So I went upstairs and woke up Bob and made him come down and see it. Neither of us could guess exactly what the HW FAULT meant, so I got out the computer and started trying to find the manual online. I found it quite easily TODAY, but for some reason last night Google was being obtuse.  We called our vendor, who paged the on call person, who paged the on call RT.  By that point the vent had changed its mind about alarming and was quiet again. The RT was at least able to assist us in figuring out that HW FAULT meant that probably one of the sensor leads had gotten moisture in it and was helpfully letting us know in the most confusing and panic-inducing way possible.  Our best guess is it happened when the vent decided to inflate the saline bag with air.

Finally a picture of Dorrie in her Easter finery. I’ll try to upload a more extensive picture post some time this week.

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7
March
2009

Pink Bus2

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.