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Setbacks & Challenges

June 27, 2011

One of the really fun things about MS is that it’s never boring … every day is an adventure. Some new symptom could pop up, some old symptom could suddenly disappear or something completely unrelated to MS could crop up to make the day interesting. Case in point: Saturday night.

When the phone rings @ 11 PM you know it’s either bad news or some teenager looking for Locust Boy. Either way, I hate it when it rings that late. This time, it was the rehab calling to tell us that Queenie was unresponsive- her vitals were all ok but she wouldn’t wake up and had no response to anything, not even pain. So, off to the ER it is.

When I get there, Queenie is out of it – TOTALLY. I mean this woman put Rip van Winkle to shame! Not only that, but her breathing was seriously bad – lots of wheezing, struggling to catch her breath, that sort of thing. Lots of tests, questions, questions – because we’re in the ER the docs there don’t know Queenie at all and know even less about MS. Their job, and rightly so, is to resolve the current problem and move her out of their ER for further care. Of course, since she’s so complicated, she also suddenly became very interesting and before you know it, there was a troop of docs in & out, all asking all kinds of questions. Most of them were young (I’m fairly sure my shoes were older than most of them) and just all kinds of excited when I knew the answers to their questions. They would write things down or pound away on their little e-notebooks and then scurry away to consult with the rest of the Doogies.

After a few hours of blood work, CT scans, xrays, etc, the conclusion was a UTI and CO2 intoxication (better known as hypercapnia). The UTI is something Queenie, like many PwMS, gets alot so we were almost expecting that, but the hypercapnia was a new one. Essentially, this is a build up of carbon dioxide in the blood stream and caused in Queenie’s case by sleep apnea.

Backing up a bit to Queenie’s original admission to rehab. We’d noticed, as did the admitting doc AND her neuro, that Queenie snored (we all do in our family) but she also had periods during sleep where she didn’t breathe. 2+2 =sleep apnea even to my little uneducated brain and the neuro agreed so he ordered a cpap for her. Tricky thing, that – apparently you can’t get one without getting a sleep study done, even if you say “I’ll pay cash for that” (ok, so we didn’t actually HAVE the cash for it but it was worth asking the question).  And, you can’t get a sleep study done in the rehab and Queenie can’t go anywhere to get a sleep study done because she’s stuck in rehab …so there we have a very nasty Catch-22 situation. For this, though, I blame myself …I should have pushed the issue harder. I should have put on my usual “Professional Bitch Voice” and figured out a way to get it done but I didn’t, I think because I’d allowed other things to take a front seat.

Thankfully, Queenie should be OK. The hospital is working with her to begin the process of proving she’s got sleep apnea. They can’t do a sleep study on an inpatient basis nor can they do a sleep study at the rehab so they’re doing everything BUT a sleep study and we’re keeping our fingers crossed that the insurance company will see things our way. She’s on antibiotics for the UTI and they’re keeping a strong eye on that – UTI’s are nasty dangerous things especially for PwMS because they tend to be “repeat offenders” and can cause systemic infections and do major damage.

We don’t know how long she’ll be hospitalized but we hope not for very long – she was really upset about losing ground with therapy.  For now, we’re in our usual “wait and see” mode. While we’re waiting, we’re thinking of Queenie and how much fun she can be ….take this pic for example, in which she’s making our old dog NUTS . She’s funny AND disgusting!

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4 Comments leave one →
  1. July 1, 2011 6:59 PM

    HI! I got here from Ravelry/RAICAS podcast. I know a little about sleep apnea, and I use a CPAP. Good luck with getting the sleep study.

    In the meantime, take a look at cpaptalk.com and ask for advice. Many knowledgeable people haunt that forum. They discuss buying from places like Craig’s list which requires no prescription, just cash. I have tried to understand why CPAP needs a prescription, but failed.

    • July 3, 2011 10:42 AM

      Thank you VERY much for the info & for the link to cpaptalk – we were lucky to get her a cpap – the pulmonologist (sp?) ordered it finally! Unfortunately, she’s been too nauseated to use it but I’m keeping my fingers crossed that she’ll be able to use it soon – we saw so much benefit from it!!

      My DH, Big Daddy, uses a CPAP, too, so the forum will be doubly useful. Thank you again 🙂

  2. Sandie DelVecchio permalink
    June 27, 2011 10:20 PM

    I don’t know what to say except I have been thinking
    of all of you and I’m so sorry about all this crap. There’s no rhyme or reason to why all this goes on and on and that’s what’s the most frustrating. And I’m just a bystander who really liked her first because she was my bank’s customer service lady. Time for some good news, people!

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  1. Updates & Good News « Tending the Queen

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