Monday, March 10, 2014

Safe and Sound

     It's been a week now since my husband came home from the longest hospitalization he's had since we've been together. Hell, it's almost the longest hospitalization he's ever had, period. Even his aortic valve replacement surgery only landed him in there for six days, half the time of his incarceration this time around. I get why they kept him so long this time, even if I'm not one hundred percent sure it was the right course of action. Then again, since we're more or less winging it when it comes to his treatment anyway, the decision to admit him for almost two weeks was probably just as good as any other.

     The thing is, since Marfan's Syndrome isn't that common a disorder in the first place, and people who are affected by it to the degree my husband is aren't exactly known for their longevity (or they weren't, hopefully that's going to change soon), it's difficult to know what to do to treat the increasingly-odd symptoms that he keeps presenting with. It's essentially one giant, drawn-out science experiment whenever my husband goes to the hospital with something new and God only knows what the end result is going to be.

     I know that sounds harsh and I swear, again, I don't mean it to be. I wish sometimes that I could either just speak directly to everyone who reads my words so that they can hear the spirit in which the words are said, or learn to shut up so that it wouldn't be an issue. Since neither of those two things is going to happen anytime in the near future, let me just say this. I have the utmost respect and gratitude for the various medical personnel who have taken care of my husband over the years. They're far, far better at this than I am and I don't claim to know a fraction of what they do. That said, it often feels like we're living in a Petri dish and people are just waiting to see what happens to the little creature living it in when they add two drops of this and four of that.

     The experiment turned out pretty well this time, even if the steroid injection failed. See, the problem this time around was that they knew there were cysts of some sort on my husband's spine, but they couldn't see how many or what type they were without doing one of two tests - an MRI or a myelogram. Both of those are normally handled as outpatient procedures, but we don't do "normally" in this family, so instead, my husband took up temporary residence on the fourth floor of the hospital near our home.

     MRI is the acronym for magnetic resonance imaging, a type of x-ray, to really oversimplify it. It doesn't work on people like husband, because all the surgical steel implanted in his body interferes with the magnets and throws off the results. So that's out. That left the myelogram, which I discussed last time, why it's a pain in the ass and why it was our only option.

     It went as well as could be expected, I guess. It ended up being kind of a fail after all, due to the fact that the dye that had been injected couldn't really travel down him spinal column like it was supposed to because of all the bone growth around the titanium rods that were implanted almost eighteen years ago. They ended up sending him to get a CT with contrast, since the dye was already there, and that ended up being the thing that told them what they needed to know - we were looking at multiple cysts, they weren't Tarlovs, and they're benign. For now.

     It was decided to let sleeping cysts lie for the time being, as the less work the doctors have to do on my husband's body, the better, since he's a shitty surgery candidate and doesn't heal well anyway when he does have to go under the knife. As happens sometimes, the doctors apparently decided to apply the in-for-a-penny-in-for-a-pound way of thinking and just did a steroid injection while they were in there, seeing as how my husband's blood was in the sweet spot where they could safely do a puncture. It was kind of an afterthought, something that could help alleviate the pain shooting into his legs.

     It was still another week before he would be released, because after the T.I.A in 2012, the doctors weren't willing to take any chances and declined to bridge him back to his warfarin with Lovanox shots, which is how it was done the last time it was necessary to do a lumbar puncture. Twice now, he's been bridged that way, once for the first steroid injection and once for hernia repair surgery, with mixed results. And by "mixed results", I mean the first time turned out fine, but the second attempt led to a mini-stroke. Win some, lose some, I guess.

     Technical explanation for what I just described, in case anyone cares? Essentially, my husband had to be pulled off his long-term blood thinner, warfarin, in order to get his blood to thicken up to the point that it was unlikely to seep into his spinal fluid. Now, as soon as it hit that point, the procedure had to be done and my husband had to start the process of thinning back out to somewhere between 2.5 and 3.5. This process was completed before by using Lovenox, a subcutaneous injection that my husband would give himself twice a day. This time around, though, it was decided that it would be safer to bridge back to warfarin with a heparin drip so that the nurses could keep an eye on him while we waited for the numbers to climb.

     It took longer than expected, because why wouldn't it, but he eventually hit 2.5 and at that point, Dobby was free! Pack up your shit, grab the discharge papers and let's get the hell out of here.

     For whatever reason, I had a hard time with the hospitalization this time around, and was so far past ready for him to come home with me it wasn't even funny. I'm grateful, though, that we went the supposedly safer route this time, because no one likes mini-strokes. They're just un-fun. I don't know for sure that this methodology was the right way to get the job done, because the doctors who treated him before were damn good and I don't know who's right. Maybe the T.I. A was a freak thing, maybe it was because he used the shots to get his INR levels back to where they needed to be. I doubt even the doctors will ever know for sure.

     Hopefully the experimentation pays off one day and we won't have to go through this song and dance every time something like this pops up. Even if it never pays off for us, maybe it'll help some little kid somewhere who's just starting on this highly confusing, intensely frustrating path of unwellness. Maybe for them, it won't be the same road littered with glass shards to dodge and razor blades to avoid. Maybe, if we're insanely lucky, the creature in the Petri dish will  end up safe at home next time we come across this type of trial instead of riding it out in a hospital bed.


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