Wednesday, January 19, 2011

The Tubes (not the band), or, meditations on the medical community from a mother's (and an IF person's) perspective

First, a quick update about my last post (relationships are hard). Things have improved since last week. He apologized for being difficult and we've both backed off on the sniping at each other. I don't think things are worked out for good, of course, but they're better. We're trying to respect each other's space and habits more than we were. Phew.
Now, on to today's exciting news: W probably will have to get ear tubes because of a stubborn ear infection that has only marginally responded to three courses of antibiotics. This post is not really about ear tubes, though. My sense, from Dr. Google, is that ear tubes are used often, are routine, and aren't anything serious to worry about. If you think I should feel otherwise, please let me know. Am I missing something?
Instead, this post is about negotiating the medical system, both as a woman and as a mother, because today's visit to the local children's hospital with W to see the specialist about the ear tubes brought back a flood of memories of the first full week of W's life (in which we spent 8 days in this very same hospital for apn.ea and fairly serious jaun.dice). I haven't written about those days in much detail, but they really haunt me. Still. Even pulling into the parking lot this morning made me shudder a bit because I vividly recall pulling into the lot in the dead of night to "visit" my newborn son in the ICU.

The short version of the story is that we rushed back to the hospital on W's second day home from the hospital (after a relatively normal birth). He had jau.ndice, and even though we had done the normal blood tests for the bili.rubin (sp?) and they seemed okay, I had an overwhelming feeling that something was wrong on Wednesday afternoon (we had been released to go home two days earlier, on a Monday). On that Wednesday afternoon, as I waited for the ped to call with the latest blood test results, I looked at W and knew that he was getting weaker. I picked him up, carried him to the very cold storm door, and when he didn't react to his bare foot on the window, I started to freak out. He didn't flinch. He didn't even wake up. Yes, he was breathing, but he just wasn't right. I knew that jau.ndice would make him sleepy, but unresponsive? We called the ped, got the latest test results that said his bili.rubin was now at 19 (which is apparently bordering on severe and in need of light therapy), and the ped suggested taking him in to the hospital right away.

I'll never forget the front desk person asking how old he was, and when she heard "four days," we got an immediate room and attention from the doctors. W clearly needed to be under lights. Unfortunately, he wouldn't really respond to the doctors attempts to get him to wake up and take some bottled breast.milk. And to make matters worse, he stopped breathing while they were examining him. It's called apn.ea and even though he started breathing again each time it happened, the doctors were alarmed enough to admit us for the next 8 days for testing, observation, and massive amounts of antibiotics delievered intravenously. Oh, his tiny little veins! I'm semi-crunchy about things like medication and antibiotics, so imagine my stress about antibiotics pumped directly into him for days on end. I tried to fight it, but they were afraid he had menin.gitis, and they argued persuasively that to not treat him for menin.gitis before we knew for certain he didn't have it would be unethical. I spent a lot of time in that ICU holding his little body and whispering into his ear: "if your body doesn't need those antibiotics, just flush them on through. Just let them go. And if you need them, little body, take them and use them well." The jaun.dice got better over the next few days, the menin.gitis test proved negative, and the apn.ea never returned, though we spent a month on a terrifying heart rate monitor after we left. I also want to say loudly and with emphasis that I never want to witness another series of painful spinal tap attempts on a newborn. Awful. I know he'll have no memory of that pain or that 8 days, but they're stuck with me forever.

My instincts were right on that Wednesday afternoon. Something was wrong--severe jaun.dice--and something more foreboding needed monitoring, too--apn.ea. My instincts were also right a few days later when I was suddently overtaken by a clear feeling that W would be okay. That he was fine and would be fine after we left the hospital. I don't know why I felt this (we hadn't even gotten the menin.gitis results yet), but it was as clear as day.
When I walked into the hospital lobby today, this all came flooding back. I saw the benches where I had cried through cups of tea, and I rode again in the elevators that used to take us up to the ICU where I was never quite sure what I'd see on the other side of the doors. Would he have taken a turn for the worse? Was he hungry and my tea break took too long? Would he catch the illness of the really sick baby in the bay next to him? Did I remember to bring the milk I had pumped in the middle of the night last night?

All my life, I didn't believe that I would have mothering instincts. And to be honest, I don't know if I really believe in those kind of instincts. I don't believe that women have some kind of access to knowledge about children, even children who came out of their bodies, that other people don't. And because I never thought I was particularly good with children, I didn't think I'd be as tuned in as other mothers might be. I still think this, even though in those newborn days, I had some kind of instinct that said "go to the hospital" and then later, "he's fine."

My instincts have failed me in the months since that hospital stay, in fact, and when I first found out that W had a bad ear infection, it was when the doctor found it at W's one-year old well-baby visit. I had absolutely no idea. I thought he was fine and I saw no signs of any problem. Whoops! I also have no sense when W wakes up in the middle of the night, no second sense about W's waking or sleeping cycles. My husband regularly hears him singing at 2 a.m. or whimpering a little at 5:30 a.m. because he's half-asleep. But me? Nothing. I'm usually sound asleep. In the very beginning, yes...I heard every noise W made. Now that he's over a year old and I'm not breas.tfeeding anymore, it's like I've tuned that sense out.

I also felt, today, that echo of medical discontent that comes from my time as a former (and possibly future) RE patient. Modern medicine is amazing. It saves lives and seems to perform miracles. Many men and women get the help they need from doctors to have families. And I've benefited from medical treatments, too. I take medication for an thyroid, I just went through therapy for my bad left knee, and I get a yearly physical, just like I'm supposed to. I got rho.gam shots for miscarriages and the pregnancy with W because of my negative blood type, and I imagine it was a good thing. But there is always a shadow, for me, to modern medicine. I don't trust doctors and nurses completely, and I know that modern medicine cannot treat everything and cannot prevent heartache. The echo of my miscarriages--getting that awful internal wand to show me that the sac had disappeared, or that my ute was, indeed, once again clear and ready for another try--reminds me of this fact. My RE could not prevent those miscarriages, and she could do nothing to ease the heartbreak. Modern medicine fails as often as it succeeds. How can we trust, given this record?

I'm also just not comfortable with doctors. I've never felt like they understand what's going on, and somehow, I often sense that they're suspicious of me, as if I'm making up symptoms or describing something incorrectly. Maybe I have just been unlucky. Maybe I don't know the way to phrase my questions or answers to be clear. Or maybe I'm not listening well to what they're saying, either; it is entirely possible that the problem is on my end and not on the medical professionals' end. I spent months second guessing that original hospital trip and the massive antibiotics that W got. I have worried endlessly about W's subsequent antibiotics. I have spent way too much time reading about the vacc.ine controversy and trying to figure out where I stand (and for the record, we've immunized on schedule and I mostly feel okay about it). And for myself, I think about whether baby aspirin or some other treatment would have improved my chances of not having a miscarriage. I mostly think the RE and everyone did the right things (which was essentially nothing--it was determined that there was nothing really wrong and that I was miscarrying in part because I was old and the embryos were probably not developing properly). But do I know this to be true? Always suspicious. Always worried.

I hope that these flashbacks to the early days in the hospital go away because I'm really sure we'll be back for ear tubes. Again, I don't really think I have any motherly instincts, but I have some sense that these tubes will be in our future. I don't know why, I just feel it. And I hope that as we start ttc #2 and as I continue vaccin.ating W on schedule, I can relax a bit and stop worrying so much. It's cliche to say it, but because of Dr. Google, there is so much information floating around and it's so hard to sort through it. It's so hard to know if one doctor's opinion is right and another's is wrong. In the end, mothering instincts or not, I think I'll just have to go with the flow and trust some people at least some of the time. But this is where I am--meditating on how to be myself, how to make good choices within a system that I fundamentally mistrust, rightly or wrongly so, and doing a lot of breathing in and out to relax. In. Out. In. Out.

1 comment:

  1. Hi Rachael. Gosh hon so much going on for you. But take your advice and breathe. A friends kid has ear tubes because of constant ear infections and he is doing fine with them. Good luck TTC 2.

    ICLW #126