Pilcrow

I was born with a bilateral cleft lip and palate. In short, the roof to my mouth never fused close during my development, and was open to the nasal cavity above. Bilateral means the split extended through my upper lip evenly under both nostrils. This as you might imagine is something of a problem, but it’s actually fairly common—about one in 700 births worldwide—and readily treatable through surgery.

And treated through surgery it was. One of the reasons I know and love Boston so well is from regular repeated trips there, as my treatment was handled by the Boston Floating Hospital, part of Tufts New England Medical Center. (Oh, apparently those names are outdated, it’s now the Floating Hospital for Children at Tufts Medical Center.) I would go down regularly for checkups with the doctors and also have normal dental checkups there as well. I would always ask my parents what they were going to do that visit, and my dad would always say they were going to pull out all my teeth. Somehow I managed not to be traumatized, and rather to love visiting Boston.

My visits were always on Mondays, as that was my dad’s usual day off, and he always brought me; most of the time Mom was either staying home watching my younger sister, or in later years was at work. Sometimes after the checkup we’d go downstairs to the cafeteria in the basement and get doughnuts, coffee for Dad and chocolate milk for me. Other times we’d take a walk through Chinatown and the Combat Zone to Faneuil Hall Marketplace and get lunch, usually at Swensen’s. It’s funny that I spent all this time regularly with my dad but don’t recall talking with him that much; he was generally pretty gruff, but obviously cared for me a lot.

I know I had several operations before kindergarden, and I can remember at least three after that, during kindergarden, first grade, and my last one at the end of fifth grade; I’m pretty sure there was another one during second or third grade too, but I forget exactly. I remember hating to get shots, and one time throwing enough of a fit that they had to have a couple orderlies hold me down on a stretcher so the nurse could give me the shot I needed before the operation. I remember talking one night with a girl who was in one of the other beds in the room, climbing out of bed to go over to her side of the room because I couldn’t hear her well, and getting caught by a nurse and ordered back to bed. I remember waiting days during one stay for the chance to get up to the playroom, and finally being allowed up there only to have my parents show up shortly after to take me home. I remember waking up in the recovery room and having to pee in a container, and not really thinking or caring it was right in front of the female nurse. I remember talking to another kid in fifth grade, a boy who said he wanted to be a gigolo when he grew up, and riding around in wheelchairs. And I remember waking up on the operating table once: specifically, suddenly being aware of myself lying on my back, looking up into a bright light, and seeing a doctor looming over me and lowering the anesthetic mask down over my face.

When I had my operation in fifth grade, I had the understanding that that would be the last one. It was mainly cosmetic surgery, too; my upper lip had always had a puffed-out appearance due to the early repair work, and that operation was to reshape it to look more natural. As I recall, for some reason they also built up my nose to be larger at that time, and I’ve never understood why; I do remember them telling me I could have another operation when I was older, if I wanted my nose re-shaped again, and at the time thinking there wasn’t any reason why I’d want that. As an adult, I think my nose is rather crooked and a bit large, and it might be nice to have it a bit straighter and smaller, but it doesn’t matter enough for me to bother changing it.

However, it turned out that that was not my last operation for cleft palate repair, after all. During my teens I had a couple upper front teeth pulled, so there’d be room for the rest, and ever since then I’ve had gaps on either side of my frontmost two teeth. The gaps were filled by false teeth on my retainer, and matters stayed that way for years. In the year before I moved to Seattle, I finally started considering getting permanent false teeth, and after moving I made a point of discussing that with my new dentist. That led to consultations with an oral surgeon, which led to the revelation that although the hole in the roof of my mouth had been repaired when I was a child, they had never actually done a bone graft to fill in the missing bone, and I would need that bone not only to anchor the false teeth but also to avoid eventually losing my two frontmost teeth. So I have since had yet another brief hospital stay for further cleft palate repair work—the initial bone graft—as well as a second outpatient operation to fill in some more. And the work still isn’t finished, as I haven’t yet been able to afford to actually get the posts for the false teeth implanted.

I’d like to think that some time soon, even within the coming year, that I can get that done and finally be able to consider the repair work complete. However, much of my life has been shaped by the fact of being born with a cleft palate, and I will always be marked by it. More on that in a later post.

Well, so far things are okay. I'm not feeling any pain and haven't taken any pain relievers. My arms and legs do feel weird, particularly at the knees, elbows, and wrists - it's that limbs falling asleep feeling, but not quite the pins and needles level, just constant tingling. I'm not sure what that's about, it's not mentioned as a side effect of the antibiotics I've taken, so I'm guessing it's from the anesthesia/sedative from the operation.

As to that, I don't know what the sedative was, but I lost consciousness just as if it were general anesthesia, and when I was next aware of myself, I was lying on my couch at home with the blanket from my bed over me. According to Tony, who was escorting me, not only was I able to walk back to the car when we left the doctor's office, I also insisted upon unlocking the doors to get back into my condo, although I couldn't actually pull the building door open. I have no idea how I was even capable of picking out the correct keys. I was also able to remove my coat and my boots before collapsing on the couch; Tony must've got the blanket for me. Apparently I just moaned occasionally during the ride home, although Tony claims I made a clearly disparaging moan when he made a wrong turn. I have absolutely no memory of any of these activities; I can only guess that this is what it's like to get really wasted on alcohol, or be turned into a voodoo zombie (as distinct from an undead cannibalistic movie zombie).

I don't really feel tired, but I'm starting to feel spacey again, so I guess I should go to bed soon. I just hope this lack-of-circulation tingliness goes away soon, it's bothersome.

I haven't done an update on the teeth situation since August. Of course, I also hadn't seen the surgeon since then, but I had another checkup yesterday. Everything seems stable, so the next step is to schedule the secondary bone graft, to fill in the right side a bit. This time the operation is much simpler and can be done at the surgeon's office. They're going to do a pre-authorization check with the insurance to determine what will be covered, and I won't schedule it before then. At the soonest it'd happen in January or February, but I may just put it off to mid-summer if that won't cause problems, just to give myself some more time to cope with things financially.

Along those lines, I finally got a statement from the insurance company about the surgery bill, and the news is good, so far I don't owe anything more. There was some irregularity with the claim being filed, apparently the insurance company changed the way the doctor's office was supposed to submit the claim, so half the work is still being reviewed. That means I could end up having to pay something after all, but I'm hopeful that they are going to cover all of the rest. That would certainly make the next step easier; the estimate for this operation is a mere $2,300, of which they think I'd have to pay about $1,000, which is feasible.

After the touch-up graft, I'd probably have to wait another six months, maybe less, before they could implant the posts. If I do put off the next graft until summer, then the last step of the work, actually getting the false teeth, might not happen until 2008, coming on four years since I first saw the surgeon about that. I'm not impatient though; I do feel like things are progressing and the work will be done eventually.

Two weeks ago I wrote that I'd received the surgery bill. That wasn't the surgery bill. It was the one-night hospital stay bill. Today I received the surgery bill.

The hospital stay bill - which does have the description "outpt amb surgery", where "outpt" is outpatient, I'm not quite sure what "amb" means but it could be "ambulatory" - showed total charges of $30,347. Yes, that's right, thirty thousand dollars. When I discussed the surgery expenses at the surgeon's office, they gave me an estimate of about $16,000 for the work. So when I got this bill from the hospital, I presumed it was the total cost and was for whatever reason - perhaps having to stay overnight - nearly twice what the estimate was. But no, this turns out to be a wholly separate charge. The actual surgery bill, as in the bill from the surgeon for his services, is $15,208. And while I'm tallying up charges here, the anesthesiologist's bill that I mentioned before totalled $1,872. Thus, the total cost of the surgery - presuming more bills from who-knows-who aren't about to show up - was $47,427. Add another $2,275 onto that for my trip to the ER, and that's $49,702.

Now, my understanding of the insurance plan is that I'm responsible for up to $2,000 per year, and insurance covers 100% (for services that are covered, of course) after that. My share of the bills so far is $200 for the anesthesiologist, $948 for the hospital stay, and $198 for the ER visit, or $1,346 total. If my understanding of the insurance is correct, then I should be charged $654 for the surgeon's bill, and they should take care of the rest. However, the surgeon's bill shows my claim being "in process" and says the total's due on August 10th. Obviously I can't, and won't, pay them $15K while insurance gets settled. I'll have to call them Monday though and find out what's going on.

Being responsible for only about 4% of nearly $50,000 in necessary surgery is a pretty good thing. But I'd find it easier to be grateful if I weren't still worrying about paying that 4% and about whatever other debts will be added on top of that in the near future.

Naturally, shortly after making my previous post, I had an attack of acid indigestion. I'm still not sure why, but I think it was a combination of only taking the Pepcid once that day (since I had got up late, and wanted to avoid overlapping with taking it the next morning), having had a lot of ice cream, and possibly taking my antibiotic dose a short while after eating instead of right away. The information with the antibiotic only says to use a full glass of water, and food is optional, but it still may have irritated me somehow.

Aside from that one attack though, I was fine through the weekend. I stopped taking the Pepcid after Sunday night, because the doctor had said to use it for one to two weeks, and the bottle also said not to use it more than two weeks in a row; Sunday was 12 days. I have been doing okay since then, but I note that I have had an acidic feeling in my throat when it's been a while since I last ate, with some discomfort just a bit ago. However, I also haven't been using any Mylanta, so perhaps I just need to make some occasional use of that, when I'm feeling uncomfortable, and I'll be okay.

My checkup with the surgeon today went well. He's cleared me to eat pretty much anything I don't actually have to bite into with my front teeth, so that makes my diet more manageable, though I expect to still be eating cautiously for a while. He's also put me on another week of antibiotics, because of some lingering puffiness in my gums, which is also keeping me from wearing my retainer again. At this point, I don't even want to start wearing the retainer again, I'm used to not having it. I'm really looking forward to having my false teeth in place and having a less obtrusive retainer, or at least only needing to wear it at night. However, the surgeon also said he thinks it'll be six months to a year before it's time to implant the posts, rather than the three to six months he'd been saying before. It's also possible I'll need to have some more bone grafted, just because what's been added may deteriorate a bit, but he said that a second graft would be much easier.

In other news, my parents' visit went well, we had a good time. We didn't do anything big and adventurous, mostly just walked around bits of Seattle and also Tacoma on Friday. Mom ran a half-marathon on Sunday as part of the Seafair Marathon, she missed her goal of 2.5 hours by 10 minutes but was still pretty happy with the race. They left on Monday, headed down to Sacramento to visit an uncle and see Yosemite National Park.

In conjunction with their visit, I finally got curtains from IKEA for the living room, adding more privacy and also blocking out more light when guests sleep over. I still don't have window screens, and since my options seem to be to buy materials at Home Depot to make my own, or go searching around for some local company that supplies or custom-makes them, I'll probably end up not dealing with it until next year. Huh, I guess I never actually wrote before about some of the minor issues with my place. Well, one of them is that my unit has no window screens; not all of the other units have screens either, so presumably they were not supplied in the first place. Anyone in Seattle happen to know a good place to get screens? (Edit to add: the windows are large single-pane ones, nearly 5' tall, that slide open to the side. Therefore, the small expandable screens that go in a vertical-sliding window won't work.)

All done with painkillers? Ha! If I hadn't already said I wasn't on drugs in the previous post, I'd have to accuse myself of being on drugs when I wrote that post.

Being at work for the afternoon was tiring, and my teeth gradually got more sore. Also, I found driving to work seemed to make me tired and my head a touch motion-sick, maybe because I'm not used to the extra mass in my head yet, maybe because of the extra fluid still in my head, maybe some other reason. Anyhow, driving home didn't seem to affect me. However, I had to stop at the grocery store, and that definitely made me more tired and my head more sore. It was much like when I first got braces, all I could feel was pressure on my upper teeth and jaw. By the time I got home I was feeling pretty unhappy, and I immediately took one of the stronger painkiller pills with a glass of milk. Just drinking the cold milk seemed to help soothe, or at least numb, the teeth. So now I'm trying to sit for a bit with a cooling pad strapped up against my mouth, and that also seems to be helping (though it's rather awkward).

Hopefully my teeth will settle down over the next day or two, because if I go back to taking the ibuprofen regularly, I'll run out in a couple days, and I really can't drive if I have to take the stronger hydrocodone/ibuprofen. Of course, there's just a couple days until the weekend, so then I'll have another couple days where I can basically sit around at home if I need to.

The doctor said the worst swelling would probably be on Friday, and sure enough today my face is swollen and stiff, and I feel like the elephant man. Actually now that I've been up and out of bed for a bit, I don't feel quite as swollen and blah as when I woke up. I showered and managed to shave without cutting myself, which is good considering how swollen I am.

Eating is tricky - I had to lick the cream of wheat off the spoon because of my upper lip being stiff and kinda numb. I'm going to try to get more food in me today, though of course I'm still on a liquid diet. My head really hasn't hurt at all, which is nice, I've just had some soreness and stiffness in my neck and other muscles, from lying down a lot and not eating much.

Oddly, the swelling seems to be affecting my hearing, as the electronic beeps of my cell phone and microwave both sound lower-pitched to me today. I'm not noticing that so much with the radio, though.

Well, I think I'm going to hook up my VCR and finally watch the tapes of Spaced and Black Books that Doug gave me two Christmases ago.

Once again, thank you all for your continued good wishes.

I will be getting up in just under 12 hours to go for my surgery (scheduled for 7:30, but they want me there about 2 hours before).

I just realized how unreal that is to me. I have to get up at 5 AM? So that people can cut into my head through my mouth, and stick bone inside? Whatever.

It's very strange to know it's going to happen, but not really believe it, but to be aware of that nonsensical disconnect.

Five AM is going to be a rude awakening for me, indeed.

I visited my doctor today as part of the preparations for my surgery. We didn't do a full physical, she just checked a couple basic things and then they took blood for a set of standard tests ("complete blood count"). She asked about my activity level, and I replied "sedentary" in a facetiously exaggerated guilty voice. I did then tell her a bit of what I wrote in my last entry, about being able to take very long walks with relative ease but being "wiped out" by my short sprint. She pointed out how the sprint differs, that I was going almost from rest to full speed without a warm-up, and of course I haven't been doing any kind of activity to make me fit for that kind of sprint. Still, that just emphasizes that I need to get some regular activity back into my life.

I had to go grocery shopping tonight, so I picked up some stuff I thought that I'd want post-operation. I still feel somewhat at a loss about my diet, not having a good idea how long I'll be stuck to liquids, and not feeling like I know enough about what to make. I'm also torn between not wanting to buy excessive amounts of stuff and worrying that I won't have enough to last until I'm up to driving myself again. Maybe Andrea's right and I should just sleep for a week...

This Saturday I'm having a party at my place. Back at the beginning of May, I just thought that I hadn't had a bunch of people over since my housewarming in November, and it'd be nice to have a party before the operation. I've also been feeling a little morbid, in a whimsical fashion, since filling out the consent form at the surgeon's office a couple weeks ago, so I keep thinking things like, "yes, it'll be good to see all my friends before the operation, just in case...," or how I really need to call my siblings as well as my parents before the operation, just in case.... I guess it's just a matter of being an adult for this operation, with responsibilities, and with an understanding of potential risks. Well as I said, it's been a whimsical mood, not a dark brooding one, so I guess I'm okay with things. I do need to prepare a contingency document this weekend though, so my friends know who to call, just in case.... (Heee.)

On that note, I'll have to make a point of posting next Thursday after I get home, to let you know how things went. I may not post more than "Owwwwwwww...", but I will try to post.

I haven't got around yet to telling you that the burglary trial ended mid-week after I testified, and the defendant was found guilty. I still haven't been paid for my witness appearance actually, I hope that arrives soon. (It's not much, but what with being so cash-strapped, it'll be a week's worth of lunches.) I'm also supposed to receive a form that will let me describe the impact of the crime upon me, for the judge to consider during sentencing. It's optional, and I may fill that out, but I'm not sure.

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Earlier this week I had another appointment at the oral surgeon's office, to find out exactly what's going on with my insurance coverage and when we would schedule the procedure. My medical insurance will cover 90% of the bone graft surgery, which is good, but given the estimates they gave me I will still have to pay $1,600 or so. What's more worrisome, financial-wise, is the work that remains after that: apparently the actual implants and the false teeth come under dental insurance, which pays a maximum of $2,000 yearly, and each of those procedures will cost something like three times that amount. However, the implant work is done three to six months after the graft work, and the final teeth replacement is another three to six months later, so I have some time to find ways to deal with this. In any case, this work is all necessary, as I've explained before, not just a simple vanity choice, so it has to be done. The bone graft surgery is now scheduled for June 7.

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What with the continual dental work and the pressing financial worries, I've been pretty stressed lately. No doubt that's contributing to my general achiness and not sleeping well - or at least being tired a lot during the daytime regardless of how I felt about my rest - and also may be why I seem to keep getting canker sores every few weeks. Stupid canker sores. Also this afternoon, I started feeling like I was developing a cold, but that feeling lessened after I got home and started eating dinner and drinking cranberry/orange juice. Still, I'll have to make sure to get to bed earlier than usual - hopefully Nimiel won't decide that means we get up earlier than usual, though given how she's been feisty the past few mornings, I don't have much hope.