31
October
2008

Home Nursing, or The Land of Never Ending Personal Drama1

When we were home in January, we weren’t yet approved for more than brief nurse visits. There was some bureaucratic finagling which needed to occur between our primary insurance, the nursing agency, and our secondary medicaid before hours could be approved. So it was the first week of February before we got a nurse for a substantial shift, and we only had her for about three weeks before Dorrie got sick and we were back to the hospital.

This time when we came home we had joined the rarified trach and vent society, and so our nursing needs were even more specalized and harder to fulfill. But they had secured us a nurse for the daytime, 5 days a week, and assured us that they were looking for someone to staff nights. (They did eventually find a night nurse; that it took nearly 2 months from then for her to finally start working was not atypical as we shall see.)

For a few weeks, things went about as well as could be expected. The fact that I got sick helped a bit; the nurse was able to be essentially on her own with Dorrie for a full week while I stayed upstairs and tried not to contaminate anyone. And as time went on, I grew more comfortable with the nurse, she got more comfortable with us and with Dorrie, and Dorrie grew to know her.

She’d probably been working here for a month or so when she first mentioned that she’d need to leave early one day ‘to take her kids to the dentist’. (Note that she is a currently single mother with 4 children.) This was fine, and to be honest I felt and still feel that 5 days a week is a bit too much nursing for us. So any little breaks we could get were fine by me. In any case, she implied that this would probably be a monthly thing, and it certainly didn’t bother me any. Then one day she came and just looked terrible. I sent her home. I didn’t expect her the next day based on how she’d looked, but as, essentially, her employer, I did expect that either she or the nursing agency would call to confirm that she was not coming. This did not happen.

Things went on like this for a while, with several more illnesses popping up, and more and more ‘appointments’ coming up to make her have to come late or leave early. Most of these we heard about with less than 24h notice and some we never even heard about at all; we were just left to guess when she didn’t show up for work.

In July the nursing agency suddenly called to tell us that she was no longer available on Monday or Wednesday because she’d taken another case. Since she’d given us no indication of any such thing, I was surprised, but welcomed the opportunity to cut down our daytime nursing just a wee bit. I had been reluctant to do so before that because I -knew- she was a single mother, she got on well enough with Dorrie, and I was concerned that if we tried to go to less than full time she might not be able to stay. I had my selfish reasons, too: I didn’t want to have to break in a new nurse; I was used to the one we had.

It was not too long after the switch to 3 days that lack of attendance and lack of communication started to get downright silly, and I felt that I needed to start keeping track.

From August 18-October 14, she was scheduled to work for us a total of 23 weekdays.
5 days she called out with less than 24h notice.
5 days she was late or had to leave early without having arranged it in advance.
Of 6 weekend days she had also arranged to come for 4h, she called out twice and was late once.

Oh, she always had an excuse. Her life is filled with drama. House fires, ex mothers in law, children in the hospital, children missing school buses, evil landlords, crazy neighbors, traffic accidents in front of her house, floods, car trouble, misbehaving teenagers — it was like a train wreck. In fact, I’m surprised she wasn’t somehow involved in an actual train wreck. I began to seriously wonder how on Earth she supported 4 children when she could barely show up at work. Surely her paychecks were affected considerably by having not worked a full week in over a month and a half.

Even I was beginning to get annoyed. It’s not so much that I minded the lack of nurse, but what I did mind was the near constant changing of plans at the last minute. Those of you who know me will know how VERY MUCH this sort of behavior drives me mad. I like to plan out my days. Maybe not every little detail will go exactly as I want, but I at least like to know things like “another person is going to be in the house today” or “I won’t be able to do any work because I have to watch Dorrie by myself”.

But we limped along like this, because, as I mentioned before, I didn’t really want to have to break in another nurse. Even though I was getting annoyed, and even though I was becoming more and more panicked over the idea of her coming in all winter from her home with 4 germy children and exposing Dorrie to who knows what.

And then, rather suddenly, we got another one of those calls from the nursing agency. “She’s decided to work full time at another case.” they said. I was surprised, since, once again we had no inkling of her making such a decision. I decided that since she had said nothing to me, I would say nothing to her. She left on Thursday, called out on Friday, and I assumed that was the end of her.

Until she showed up on Tuesday morning.

What.

We sent her away again, since we hadn’t been expecting her, and on Thursday the Case Manager came over and we all discussed the situation. She swore up and down that she had never said she was switching to the other case, that she didn’t WANT to switch to the other case, and that she fully intended to keep with the schedule she had. Even though I had been somewhat relieved to remove the threat of her germy children from my daughter’s proximity, I made no objections, since I had no guarantees that whatever nurse they came up with to replace her would be any better. What I did say was that if she did decide to switch to another case, we really needed 2 weeks notice of that fact. You know, like a real job, not one you can pick up and drop on a whim.

And so there we left it. Or so I thought. Because the next week we got the EXACT SAME CALL from the nursing agency.

WHAT.

Bob talked to our night nurse (who, after the shaky start had turned out to be quite reliable) to see if she might want to do some days instead. She agreed to try it out.

The agency announced surprisingly quickly that they had found someone else to do some nights for us, and we even managed to get them to come in and orient a couple of days later. The nursing schedule seemed to be falling back into place.

UNTIL.

The first night the new night nurse was supposed to come, we got a call telling us “she might be coming down with a cold” so she wasn’t going to come, and would start the next week. We would hardly want her if she was ill, so we waited. On Monday we got another call telling us that the new night nurse had a “family emergency” and it would be a week or two before she could start.

I’m not holding my breath.

31
October
2008

Trends2

I love the Social Security Administration’s popular baby names site. It’s probably just about the only thing at the SSA that is easy to use and very functional. Anyway, I pulled out the data for the name Dorothy for the whole time period they have available. I thought it was an interesting curve.

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31
October
2008

F%@!ing Flickr0

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.

15
October
2008

Blast from the Past2

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.

5
October
2008

Ladylike0

Most of the pictures I post on here are the ones I deem cute. But I was looking at the camera today and found that we suddenly have a collection of pictures of Princess Dorrie showing off her perfect manners.

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