Apology

Yes, I know, if I’m going to post at all, I oughtta post something important, something relating to the somewhat impressive difficulties my small family endured this summer. Unfortunately, return from Omaha was an escape of sorts, and so I didn’t blog; school has since intervened, as have the election (loved the end of McCain’s speech, though were my policy differences with him great enough, it would not have persuaded me to vote for him), and the looking-like-it-might-be-abysmal Notre Dame football season.

Suffice it to say, for now, that Kay is doing well, mostly. A few small issues from the operation remain – a healing thrombosis, scars, a not-quite-normal-feeling abdomen (muscularly and otherwise vaguely, though seemingly improving); and then there is the sadness of it all, and her continual frustration with my position, which never boils over and only occasionally seems to surface.

I will be back. I will provide the answers to the five questions. I will, when I know, answer the question of, will we try again? I will discuss some of the adoption advice I’ve heard (four routes, one bad, one probably best, that one sort of like what happens in Juno, so they say). And you’ll hear a small yippee from me when we (they, I suppose) beat Michigan next week, most probably by something like a point.

The Waiting Game

We know now what we knew the last time I reported anything: Kay has a pelvic abscess. It seems to be under control. She has a little plastic drain coming out of her right abdomen, just a tube and a bubble pump that, when squeezed, wants to expand to its natural rotundity and so suctions out what is inside – a translucent brown liquid that is, if I’ve been listening closely enough, a combination of mucus, germs, and a foreign saline pumped in to liquefy the others. The hand grenade, which is what we call the pump for its resemblance to that weapon, hangs pinned to her clothing, transparent to allow for an easy measuring of the poisons extracted. The plan is that the amount will decrease regularly, implying a decrease in the amount available to be pumped, and that the lab will then figure out what the bugs in the brown fluid are and what antibiotics will destroy them.

Our doctors have been very good to us. Dr. Hilgers comes by every day to keep us up to date, even though there has not been much to tell in the past few days. He is always upbeat and always willing to answer the questions he can. There is none of the condescension in him that one sees so often with doctors, though he is always confident, in an understated way. Kay likes him quite a bit, as do I, and all the nurses speak quite highly of him. (This abscess, incidentally, is apparently the third time he’s seen one in twenty-five years of doing this surgery.) The GI surgeon with whom he has been consulting, and who has been very reassuring that they will fix what ails Kay, comes by every two to three days, and a Hungarian doctor from the radiology department (they put in the pump) has come by on a number of occasions to make sure the hand grenade is working well.

The wait comes from Dr. Hilgers and the GI surgeon needing more information to decide whether they want to take the internal bandages out sooner or later. On their own, Gore-Tex bandages are not a problem – they are used because they are non-allergenic, and their use is fairly common, from what we’ve heard. But as an artificial mesh, they are attractive to germs, and once the germs are in the same region, there is a chance they can colonize the Gore-Tex. Once they do that, they will be protected from antibiotics, which can only reach the abscess through the blood stream. The removal of the Gore-Tex is thus desirable, but the surgery to take them out could stir up the infection dangerously. Therefore we play the waiting game: suction and then reduce or destroy the infection with antibiotics, then go in safely to remove the Gore-Tex at a later date. What that later date will be depends, probably, on what the culture turns up and how long the appropriate antibiotics take to destroy it. It will not be more than three to four weeks, we’ve been told.

The problem now is to wait without getting too down. Kay is has been down for the better part of two days, and doesn’t know whether she wants to leave more or be well more – well, she knows she wants to be well. But she doesn’t want to be here for another week or two while it happens. We are able to go outside, but Kay is confined by doctor’s orders to the hospital grounds. There is some talk of her going home with the grenade – either to the hotel or really back home – then coming back for the Gore-Tex-removal surgery, but until they know what kind of bug or bugs she is fighting, they don’t want to let her go. Ultimately, we just want her to get better, and we’ll do whatever they want us to do to make sure that happens.

Faith and Its Fluctuations

From the beginning of this whole process, Kay and I have been ready to rejoice, only to find our hopes disappointed. The first month we tried to get pregnant, Kay was late with her period. She was never late, she’s rarely been late since, but she was not pregnant. For well over a year we tried, but nothing happened. Finally, they went in to take out her ovarian cysts, not having anything else to try (various fertility drugs, such as Clomid, had failed) only to find that she had endometriosis. At first, that seemed like a good thing: we knew what was wrong and had heard it could be cured with hormone treatment (I think I’m remembering this correctly), not to mention the scraping they had done already. It turned out that it would not be so easy – endometriosis is infinitely more complicated, and as we found out later, the scraping did possibly more bad than good, as it left behind adhesions as effective as endometrial tissue at physically isolating and damaging, through inflammation, the reproductive organs.

We finally began the process with Dr. Hilgers and the Pope Paul VI Institute, well over a year ago (perhaps a year-and-a-half ago), and things seemed to go well in the operation, though we knew it would be a difficult one, and by no means guaranteed success. But these last two weeks have been full of nothing but setbacks, it has seemed: a good first day followed by the somnolence of atalectesis; her revival and subsequent eating followed by vomiting and diarrhea; a bowel revived from ileus followed by fever and renewed coughing; plaintive hopes for pneumonia followed by revelation of the pelvic abscess. Now the less harsh procedure of the catheter and a dose of antibiotics is our hope, against which is juxtaposed the six-month colostomy. (This is not to mention the damage this kind of inflammation can do to ovaries, tubes, and uterus, which, along with the coughing, is for now a secondary worry.) I hope our beleaguered troops hold the line here.

The military metaphor arises because I have been reading the first volume of Shelby Foote’s The Civil War. I am not alone in having Lincoln as my favorite president because of his thoughts, expressed in his profound and serious words. I was too poor a philosophy student to say whether Lincoln’s thoughts were particularly original, but the humility and cadence of their expression is moving in the extreme. There are two writings that Foote quotes, in each of which Lincoln addresses situations of much greater extremity than that in which Kay and I are embroiled. In speaking to a Quaker woman who called on Lincoln to show her support for his having issued the Emancipation Proclamation, he said,

We are indeed going through a great trial – a fiery trial. In
the very responsible position in which I happen to be
placed, being a humble instrument in the hands of our
Heavenly Father, as I am, and as we all are, to work out
his great purposes, I have desired that all my works and
acts may be according to his will; and that it might be so,
I have sought his aid. But if, after endeavoring to do my
best in the light which he affords me, I find my efforts
fail, I must believe that for some purpose unknown to
me, he wills it otherwise. If I had had my way, this war
would never have been commenced. If I had been
allowed my way, this war would have been ended before
this. But we find it still continues, and we must believe
that he permits it for some wise purpose of his own,
mysterious and unknown to us; and though with our
limited understandings we may not be able to
comprehend it, yet we cannot but believe that he who
made the world still governs it.

Kay and I are not so much instruments here, not so much operating as being operated upon (quite literally, in her case), but still her subjection to treatment and my support for her can be said to be our “efforts,” and certainly our “war” would have ended before this had we been allowed our way. And our little case is as worrying to us in its threat to the world for which we are responsible – our parents, our marriage, each other – as the horrendous losses of Antietam were in their threat to the vast arena for which Lincoln was so tragically and movingly responsible.

Lincoln also wrote a private piece, left on his desk but apparently not intended for publication. It was rescued by his secretary John Hay, being published later. In it, Lincoln attempts in effect to reconcile the existence of men such as Bishop-General Pope, and his prayers, with the equally fervent Northern clergymen, and their many prayers:

The will of God prevails. In great contests each party
claims to act in accordance with the will of God. Both may
be, and one must be, wrong. God cannot be for and
against the same thing at the same time. In the present
civil war it is quite possible that God’s purpose is
something different from the purpose of either party;
and yet the human instrumentalities, working just as
they do, are of the best adaptation to effect his purpose.
I am almost ready to say this is probably true; that God
wills this contest, and wills that it shall not end yet. By
his mere quiet power on the minds of the now
contestants, he could have either saved or destroyed
the Union without a human contest. Yet the contest
began. And having begun he could give the final victory
to either side any day. Yet the contest proceeds.

This passage is perhaps less applicable to Kay’s and my situation: there is no one, after all, praying against us. But the enemy that (or who) has entered the field has not been prevented from bringing his soldiers against us. The contest proceeds. We can merely fight by our best lights and pray that, supposing it is His will on earth and in heaven, we receive our daily bread, and that our trespasses will be forgiven us. Father, if Thou wilt, remove this chalice from us: but yet not our will, but Thine be done.
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Thanks, by the way, to The Abraham Lincoln Association, as well as to that perfidious academic institution holding the electronic version of their The Collected Works of Abraham Lincoln. As their version contained some confusing punctuation – perhaps in the manuscript sources? – I have made some changes to match Foote’s version, on pp. 709-10 of Volume I of his work.

Worst Day 1.2

Well, now we know. The fever and the white blood cell count are due to a pelvic abscess. Who knows whence the cough, though that is not our worry now. What is an abscess? It’s not like an ulcer, apparently. I always figured it was a spot in the surface of the organ (skin or internal) where the germs were multiplying and eating away at the flesh. Instead, an abscess, or at least a pelvic abscess, seems to be a collection of germs surrounded by a membrane created by the body in an attempt to ward it off from the rest of the body – it sounds as if its appearance is not dissimilar to a bubble, though this one apparently multiplies and spreads itself wherever it can, without concern for a globular appearance. Worst case scenario, and fairly likely it sounds like, is a temporary colostomy, which would apparently give the body and doctors a chance to fight off the infection in Kay’s interior. The less-bad case, and the one they will try first, is a temporary catheter inserted through her side. This will drain and collapse the abscess, allowing antibiotics to more easily reach the whole of the infected area, which is cut off currently from blood supply. If this is successful, it may preclude the need for a colostomy, which would save Kay six months of that indignity and inconvenience. But better six months of indignity and inconvenience than various worse alternatives.

Worst Day 1.1

Update on yesterday: The problems of this first of the worst days have not gone away. I forgot all about the white cell blood count. White blood cells, of course, attack infections in the body. When they increase, that is a sign that there is an infection. Kay’s white blood count had gone up following the surgery, so in addition to being told to walk and use the incentive spirometer, she was also given antibiotics. Her CT scan showed, in the end, no leakage or abscesses anywhere in her gut, so they supposed the white blood count and the clearing of the throat she had been doing might indicate the onset of pneumonia or atalectesis (the “external compression of her lungs by fluids used during the operation” that I referenced in the last post). A night of the diuretic, with the dissipation of the fever the next day indicated it had been the atalectesis after all.

This issue has come back up, however, and the diagnosis seems to have been wrong, or at least incomplete. Kay’s throat clearing has continued, turning into a cough, deep and regular, but productive of no phlegm. Her temperature, having fluctuated all week, has gone up to 101.6, which is quite high, and her white blood cell count is high again, I believe for the third time since the surgery. There are two possibilities, one being that she has come down with pneumonia, which at this point would be a good thing. The worse alternative is that she has some kind of abdominal abscess or infection or inflammation (not sure how mutually in- or exclusive these things are), for which reason the follow-up procedure is going to go on as planned, if not sooner. They’ve ordered another chest x-ray and a CT scan to explore both possibilities, and if something abdominal is indicated, they’ll go in today, instead of tomorrow as planned. (In this case, the coughing proceeds from something else entirely, and is a secondary worry.)

The Two Worst Days, Part I

The bad days these past two weeks have been many, but there are two that stand out. The first worst day was Friday, the 27th of June, the third day following surgery, when Kay spent a second day in a stupor more pervasive than the preceding one, in and out of a fever, unable to get past 1500 on her incentive spirometer. She was awake, but not endowed with anything resembling her true personality, just grimly trudging through life and sleeping a sleep that may have been a “prisoners release” but was not “the certaine knot of peace, / The baiting-place of wit, the balme of woe,” for when she awoke she only trudged the more. In the late afternoon and the late evening, she was given a diuretic, the diagnosis being that her somnolence and fever were due to the external compression of her lungs by fluids used during the operation. This diuretic had no impact until late, perhaps twelve midnight, at which point she got up to go to the bathroom. This continued all the night, every half hour exactly, until it tapered off near morning. As she was still somewhat disabled from bending and yanking, I was point man for unplugging the IV – conveniently between her bed and my couch – and we both spent a vergessenworthy but unforgettable night. Miraculously, the next morning, she was better. The fever was down, the lethargy gone despite the long night, and she was allowed to take her first liquid tray since she had gone under, her first food, in fact, since noon of the day before the surgery. All seemed well.

Our Current State – Pretty Good, Overall

The last week-and-a-half has been eventful. Kay has suffered a horde of complications, some of them scary, some of them undignified, some of them simply annoying, none of them, in the end, terribly dangerous. We never did find out what a temporary colostomy would do to revive the small bowel, mostly because we’d lost interest in the question by the time we had the chance to ask it. Kay tried the liquid tray (I called it the “wet tray” earlier) yesterday morning and kept it down, meaning that whatever organs had been asleep or blocked, they’d now awakened or opened up. She’s since then had four liquid trays and one full liquid tray – the appended adjective meaning that the liquids now include milk: milk instead of juice, cream soup instead of broth. The cream soup may even have had potatoes in it!

Thus we are healing and improving. Kay’s enemies now are a relatively slow and sometimes painful digestion process, despair, and boredom. None of the doctors seem worried by the first, and it is my opinion that her digestion will improve as her GI tract realizes it’s back on the clock. The second is mild, as despair goes, and is due to missing home, wondering when she’ll ever feel normal, and fear that the follow-up procedure will restart the ileus. There’s no real way for me to alleviate this, other than to stay positive, iterate her successes so far, and remind her of the doctor’s assurance that laparoscopic surgeries never result in ilei. I thought that Kay might also benefit from getting out of the hospital, and so suggested a jaunt through the city for half an hour in our car, but our nurse said it wouldn’t be allowed, and one of the doctors disclaimed responsibility, saying only the doctor who had admitted her could ok that. That would be Dr. Hilgers, but we usually only see him in the morning, and it doesn’t seem right to ask our nurse – who said the doctor would not say yes – to ask him for us. We’ll wait until tomorrow, when we’re still likely to be here.

A Quick Note on Dr. Hilgers

My wife has been advised to be as active as possible, sitting up rather than lying down, walking rather than sitting, so we are currently outside on the rather nice patio of Creighton University Medical Center (unfortunately overlooking the highway), where we are engaging in one of our favorite, but recently neglected, joint pastimes – Scrabble. So I don’t have time for a full update, but I wanted to mention something we appreciate about Dr. Hilgers, now more than ever: his kindness and patience. He has enlisted the advice of a gastro-intestinal surgeon and a general practitioner, both to give him advice on my wife’s probable ileus and to prescribe various fluids for her IV. A young and rather jaunty doctor, who seems to be working under the GP, blew into our room yesterday when we were feeling pretty optimistic and announced to my wife, “Well, you look great, but your x-ray doesn’t!” He made a jokey comment about how he was happy to see her distended small intestine, because surgeons love when things are difficult, rather than easy. After reassuring us by saying that he treats the patient, not the x-ray – in other words, that in the absence of corroborating symptoms such as nausea and vomiting there is not enough reason to assume a blockage of the bowel and therefore no reason to operate – he blew out of the room again, residents and fellow doctors following in his wake, leaving us mouth agape and my wife jittery and nerve-wracked.

Dr. Hilgers, who has been in every morning, came in today when I was not here, having left very early to pick up my dad at his hotel for Mass and then a trip to the airport. Dr. Hilgers and my wife had a good conversation. She mentioned this doctor and his extremely poor bedside manner and how it had jarred her, how she’s now imagining all her worst fears. He asked her to tell him what she was afraid of. Other than death, she’s afraid of a permanent nutritional IV – never being able to eat again. I think doctors have to strike a balance between needlessly informing patients of worst-case scenarios, thus stimulating their fears, and limiting their fears by setting the boundaries with a worst-case scenario. In this case, Hilgers rightly chose the latter, telling my wife the worst-case scenario would be a temporary colostomy – six months is the figure he put on it – because the small intestine always wakes up. It just does. He also let her know what the next step will be: tomorrow, if the passage of gas continues and the vomiting doesn’t come back, we’ll try the wet tray again. If she keeps it down, we’ll go to the dry tray. His attention to us, his apparent knowledge, his willingness to explain and answer questions, are all qualities we value highly in him. They’ve made an unexpectedly-difficult recovery that much more endurable for us.

Update: My wife and I have been reading this over before I post it (we’re no longer on the patio playing Scrabble – I’m winning by the way – as these postings always take longer than I think they will to write), and we’ve just realized that we’re not quite sure, now that we think about it, how a colostomy would allow her to go on while waiting for the small intestine to wake up. A colostomy replaces the large intestine, if we understand this correctly, because the large is concerned almost exclusively with disposal, which a colostomy bag can do, while the small is concerned with distribution of nutrients to the body, which a colostomy bag can’t do. Clearly we’ve missed out on some details somewhere along the line, but Dr. Hilgers will no doubt answer them for us when we see him tomorrow.