Saturday, June 22, 2013

One of These Nights

It's been more than a month since I last wrote anything and I feel that it's getting harder and harder to get my thoughts out of my head. Old issues are starting to fester and become infected, new issues are popping up with an unpleasant amount of frequency. Last week? First trip to the emergency room in three months and it was one of the most frustrating trips I've yet experienced. Week before that? My husband went to the grocery store by himself while I was at work, crouched down to look at something on a lower shelf, blacked out and fell into it. Neat.

     I'm also discovering that my homesickness and growing sense of isolation is making me a less than great partner at the moment. I hate admitting that, because I always want to try harder and harder to be what my husband needs, to be that perfect support. It just feels like it's becoming more and more an unreachable standard, because I'm getting so wrapped up in my own shit that I just don't have anything left over. And let me tell you, living with something like Marfan's Syndrome takes a hell of a lot of extra on any given day.

     While I try to get that ugliness to fall in line long enough to march its sorry ass out of my head, let me at least relate what happened in the ER last week.

     It was by far the worst experience I've had in all my trips to the ER with my husband, and I say that as someone who is a native of St. Louis, where the emergency rooms can very closely resemble a tiny war zone. It was so bad, I found myself wishing for nothing more than to be magically transported back to the barely-contained chaos of our home hospital. At least there, the nurses knew my husband by sight, got him in quickly and knew that I was well-versed in his care, enough so that they'd ask me for a rundown of his meds and medical history when he was in too much pain to be of much use.

     So last Tuesday, my husband got off work a bit early and by the time he made it home, he could barely walk. He reached the point quite some time ago where he decided the ER visits were, in all honestly, pretty much a waste of time and money because the relief they provided was fleeting and no one really knew what to do for him anyway. I mean, it's been more than a year now since the ER doctor told him, as nicely as possible, that they simply didn't know what to do for him. They had no effective treatments and only the vaguest suggestions.

     Neither my husband nor I blame them at all for that; if anything, it's quite the opposite. We both know the score, that he's got something that many doctors don't see in their careers and to further complicate matters, my husband belongs to the first class of kids to have survived this long with a case of Marfan's as severe as it is. That's what my research and the few doctors I've discussed it with tell me, anyway. The doctors are (for the most part) working the best they can with the little they've got. It's nobody's fault, you see, when there's nothing to do but wait and see what breaks next.

     In any case, when my husband asked me to please take him to the hospital, I knew it was bad. He sees a pain-management doctor now and the methadone plus hydromorphone regiment that he's currently following usually works pretty well, but something must have just gone wrong, because he was not only damn-near immobile, but also slightly worried that he was experiencing spontaneous pneumothorax, which has happened to him on two occasions and which those with Marfan's are prone to.

     So we loaded him in the car and away we went. Even though we've been to the ER here in Charlotte before and I was pleased with the service and the level of care my husband received, we decided to try the other big hospital in town, because that's the one his pain-management doctor is associated with and it would make it easier for that office to pull my husband's medical records from the visit, should they need to. Next time, they're just going to have to deal with contacting the other emergency room to get the records, because like hell I'll ever go back to that place.

     It was so damned dark when we pulled up to the emergency room entrance, I thought the place was abandoned at first. Maybe that's because I watch too many horror movies, but seriously, it was bad news all day. There just happened to be a very kind maintenance man outside who saw me pull up and watched my husband struggle to get out of the car. Before I could put it in neutral and set the parking brake, the man had run inside for a wheelchair and said he'd take my husband inside to get him signed in. I thanked him profusely and then went to find a parking spot.

      Why Michael Myers wasn't waiting in the darkness of that parking lot to murder me on the spot, I don't know, because it was sure as hell a place where things like that happen. I mean, there was not a single light in the lot and the staircase to get back up to the ER was so dark and steep that the wonderful maintenance man had come back outside to wait for me and make sure I made it safely inside. In his words, "You never know who could be waiting down there." Fucking excellent.

     The wait wasn't too bad at all, though it was more than frustrating to watch my husband try and explain what was going on to the various medical personnel again and again with little to no comprehension on their part. Finally, when it became too painful for him to continue telling the story ad nauseum, I jumped in and explained exactly what was happening and why. I also spit out his medical history, because for some reason, the person taking his vitals was having the most difficult time understanding why he was in such pain. (Um, perhaps the 26-inch scar down his spine tells part of the story? No, just gonna ignore that? Okay, then.)

     It was almost two hours before anyone gave him anything for pain, because they were still trying to figure out what the hell was going on. Normally, both my husband and I have a degree of tolerance for that. There's no way every doctor can know everything about every case that walks in the front door, and this holds especially true for emergency room doctors, who have to face all manner of wonky injuries and strange illnesses on a regular basis. However, when it's already into hour 2 and they're still trying to get their heads around the fairly simply concept of so-much-pain-he-can't-breathe, I tend to start edging towards livid.

     Even then, even with the love of my life lying on a narrow hospital bed with his knees pulled up in a futile effort to try and alleviate some of the nearly-unbearable pressure on his spine, I was still able to keep my cool. That ability was tested in ways I never thought possible when the doctor who would be treating him walked in the room and proceeded to act as though I wasn't even there.

     Lest anyone think I'm trying to make this about me, let me explain something I've learned during my time spent in the hospital with my husband. When it comes to describing what's going on, typically the patient has to be the one to do that. I can't express what my husband's feeling, for obvious reasons. However, when it's a scenario like this, one which has played out a hundred times before for us, I have a pretty damn good idea of what's going on. In this case, stabbing, knife-like pain in the middle of his back and a dull, throbbing pain in the lower back, likely brought on by his dural ectasia. Also? Since he's not really feeling verbose at the moment, what with the trying to breathe through the pain and all, I'm probably your best resource for a run down of what meds he's on and at what dosage.

      So when that doctor walked in and started asking stupid questions like, "So, what are you on coumadin for?", my eyelid started to twitch. Excuse me, did you even read his chart? He's got a goddamn titanium aortic valve, what do you think he's on coumadin for? As she continued the barrage of similarly stupid questions, all the while ignoring me, she grabbed my husband's ankles and pulled his legs down straight on the bed, either not noticing or caring that he cried out in pain as soon as she did so. I had absolutely no idea I possessed that much self-control. So, hey, go me.

     Two and a half hours into our latest misadventure, the nurse finally brought in a dose of hydromorphone to be administered via IV. This brought his pain levels down to the point where he could at least talk to me and after two more doses, we knew it was time to go home, that there was nothing else that could be done for him. The doctor agreed, came in and signed his discharge papers (all the while talking over me when I tried to ask about his INR being at 5.8), and sent him on his way. All in all, a pointless endeavor that served no purpose other than to educate us on that particular ER and its stunning lack of anything that would ever compel us to go there again.

     Oh. Okay, now I feel a bit better. Apparently, I can still relate events as they happen, I'm just struggling with the more abstract things, like my thoughts and feelings on several issues that are floating around our house. So, once I can get my IP address nightmare straightened out, maybe I can find my rhythm again. Maybe it'll calm things down long enough to be able to get the thoughts somewhat corralled into the corners, where I can force them to give me a break long enough to be able to get some solid ground under me. Or something like that.

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