Monday, February 27, 2017

Surrender the Night

     I jinxed us, absolutely. Not twenty-four hours after my last post, my husband and I were back in the ER, and we stayed there for fourteen hours, eventually coming home with no clear diagnosis, but a whole new set of worries.

     He texted me on Friday, just before noon, and said that he was having trouble breathing, experiencing dizziness, and a couple of other not-good things. I had no choice but to ask my boss if I could leave work early, so that I could take him to the hospital. He'd apparently already cleared it with his boss, but I will be the first to admit that I hate having to do it on such short notice. After an incident years ago with a former employer of his, I developed a deep-seated fear of one or both of us losing our jobs due to his disability. So, that's always somewhere in the back of my head, just waiting for an opportunity to come out and wreak havoc on my nerves.

     We both have amazing employers, so logically, it shouldn't bother me as much as it did, but fears and neuroses are about the least logical things I've yet come across, so here we are. Of course my boss didn't mind, so I left to go get him and take him to the hospital. It's been almost a year since we had to go to the ER for any reason, and I was really excited about that, hoping we could keep the streak going. With the symptoms he was experiencing, though, and the fact that he's got a pending surgery in the very near future for the hernia, there was no way we could avoid it.

     "Our" hospital, and by that I mean the one that we always go to, because his specialists are based there, has made a few changes to the way they do intakes in the ER, and while it's not quite the war zone that it was, it's still not great. It took two hours, give or take, for my husband to get back to a room, though he was seen more than once for various things before that point. When they had him in triage, the nurse discovered his oxygen was low, so when I walked in (I had to park in the further garage, since it was completely full in the ER parking), he was sitting in a wheelchair, hooked up to a tank. That's a new one for us, so there's that.

     Over the course of the next twelve hours or so, he was tested multiple times by multiple doctors for stroke symptoms, because that's what everyone was concerned had happened. My husband has had two TIA's in the past, and once you've had them, you're always going to be prone them, as I understand it. Plus, with the blood thinners, there's always a chance that his INR is off, and that's also dangerous, as it could also lead to a TIA. The ER physician called a neurologist in for a consult, and for awhile, it looked like they were going to admit him. Completely understandable, given his medical history and the suspicion of a neurological issue, but not something either of us really wanted to happen.

     I actually really liked the neuro who came in to see him, which was a pleasant surprise, given that any time we've been in the ER, it seems like it's about a 50/50 chance of getting someone who's nice, or someone who's an indifferent dick. I mean, we had one of those, too, early on in our visit, but he only came in one time, and then never showed up again. Probably that was due to a shift change, but I like to think it was because the powers that be knew I was already in a bad mood and didn't want to make me deal with a jackass who nearly hit me with the door when he came barging in, and talked over me, not to me. (My pet peeve in ER's, by the way.)

     They took my husband back for a CT with contrast, which I knew they were going to do as soon as they said they had to rule out a stroke. An MRI is much more detailed, but since he's so full of metal parts, my husband can't have them anymore, because he just reflects all over the place and they can't get a usable picture anyway. Also he's convinced that the magnet in those machines is going to pull his heart valve out of his chest, which is fucked up to imagine, but which will probably not happen. (I think St. Jude's valves are safe for MRI's, but again, I'm a paralegal, not a doctor, so probably don't take my word for it.)

     The CT came back clean, meaning they didn't see any evidence of stroke on it, which was one weight off our shoulders. The relief didn't last long, though, because in the next breath, the neuro told us that what they had found was that there's apparently a spot at the back of my husband's head that where spinal fluid is pooling. He didn't think it was related to the Marfan's, which is good, I guess? I mean, we're so used to everything being just another monkey wrench thrown by my husband's disorder that neither of us ever really considers something going wrong outside of it.  Our bad, apparently.


     The doctor let us know that since there was no evidence of stroke, that while he couldn't rule it out completely, it was way down there on his list of diagnoses, so he was going to let him go home tonight. Considering it was already almost one in the morning, I don't really see what the point of admitting him at that point would have been, anyway. The catch, though, was that my husband was going to have to follow up with neurological department, and they'd already notified his specialists' office of what was going on, so they could sort of monitor the proceedings.

     I know the moral of the story ought to be that we're grateful to have such a good hospital, with such competent specialists, right in our backyard, and we are. Every time my husband goes to the doctor, even for mundane things like getting his INR tested, I'm grateful that we have a strong Marfan community here in StL. The overrriding emotion at the moment, though, is not gratitude, but frustration that it seems like the Marfan syndrome isn't enough for us to handle, but now we have whatever this new spinal fluid pool issue is. I mean, it wasn't enough that we have 87 plates spinning in the air, now there's an 88th? Fuck that noise.

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