13
April
2009
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.
Posted: nurse or no nurse, our little witch, tales of interest
31
March
2009
Height: 30.5″
Weight: 10.285kg
Had our last synagis shot for the season, much to Dorrie’s dismay. She also decided to pee everywhere to express her displeasure at being put on the scale.
Down to a PEEP of 7. Don’t anticipate -too- much of a difference with that; the CPAP valve is not exactly digital, so it’s all sort of an estimate anyway.
Also, the new night nurse showed up last night!! I was highly skeptical after her failure to show up for orientation, then her 2h late arrival for the rescheduled orientation. Hopefully she’ll also show up tonight.
Posted: little fat fairy, nurse or no nurse, our little witch
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
4
March
2009
I swear, we can never have a schedule that’s nice for more than a couple of weeks before it’s all thrown to heck.
Until last week, we had it worked out that we had a nurse 3 nights a week, and 2 days a week, plus one half day every other week (the night nurse who wanted to come and get some playtime in while her kid was at school). But the night nurse, who I like very much and has been really reliable, has had to take a leave of absence and the nursing agency has no idea when she might be back. :( I’m really hoping that it’s soon… most nights we can get by ok, but it leaves Bob and I with essentially no free time at all if we both hope to get 6 hours of sleep apiece.
The less said about our other nurse the better. She seems to like Dorrie and is a nice person, but she drives me absolutely mad with her lack of focus and disorganization.
Posted: nurse or no nurse
13
November
2008
Just to mention that the new night nurse I mentioned a little while ago has yet to start working, and the nursing agency has no idea when or if this is ever going to happen.
Right now our only remaining nurse is doing some nights and some days for us. We had her for 2 nights this week which was a huge relief, and I feel much more refreshed for having had that break.
Posted: medical morons, nurse or no nurse
31
October
2008
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.
Posted: medical morons, nurse or no nurse