Elijah's ever growing bath-duck collection now includes, among others, Police duck, Statue-of-Liberty duck, North-American-Bald-Eagle duck, Duck-in-Sheep's-Clothing duck, and what I think of as PA duck. The latest acquisition is Soldier duck, complete with Class A's. We found him (along with brothers and sisters from the other branches of the United States military) at the Eisenhower museum on our road trip this May. Dan will roll his eyes when he sees him, but he makes me smile.
TriCare won't cover the glasses (in fact, since they say they only cover two eye exams before the age of six--which we just burned in two days--I'm uncertain about whether they'll cover any of the check-ups and consultations we've got ahead of us). The doctor is appealing that decision on our behalf, but I'm not holding my breath.
Apparently this is the first eye exam where they've actually measured his visual acuity, so they don't know yet whether the sight in his left eye is getting worse, or whether it's always been not quite perfect (a distinct possibility, given our family history). And, he's not very good at the tests, yet; this could also make his vision seem worse than it really is. It sounds like they'll have a better idea over the next couple of months.
In any event, the right eye doesn't see very well. Even I could see that, from watching them administer the tests. He'll sit with a cover over his right eye all day long, looking at whatever you want him to. But if you cover his left eye, the right eye slams shut the rest of the way and he starts evasive maneuvers, trying to get his left eye uncovered so that he can use it. His answers to the question, "Now what do you see?" with his right eye were mostly, "I can't see anything."
I talked to Dan for ten minutes in the hospital lobby Monday, while we were waiting for the eye drops to take effect, before I knew anything. I want him to call again so I can apprise him of the situation; I don't want him to call, because I can already hear his discouragement over one more thing he can't fix. I don't know if deployment really makes this more complicated, or if it just seems like it.
Elijah sat on my lap on the edge and watched all the other kids splash for a long time, declaring vigorously that he didn't want to go in the water! And then I got in, and he decided maybe he'd give it a try after all.
By the end of the day, I was holding him up, one hand under his chest, the other under his hips, while he kicked his legs and splashed his arms and "swam" around the pool. He even put up with having water splashed in his face by some of the other swimmers--a big accomplishment for him.
Usually, when we're tube-feeding in public, adults politely avert their gaze, and small children occasionally ask a few questions. But Elijah's not often out in public without a shirt on, and when he is, he usually has a piece of gauze under his g-tube, which hides the (often bloody) granulation tissue. We had our first pointing-finger-loud-voice-look-at-that-poor-kid-what's-wrong-with-him?-experience today while we were at the pool. I winced on the inside, but tried to answer all of the girl's questions cheerfully and matter-of-fact-ly, for Elijah's sake as well as hers. From the questions she was asking, I think it was the button, and specifically the granulation tissue, that caught her eye, not his scarring, and I can see why she was a little taken aback. And as far as I can tell, Elijah was too interested in asking questions of his own about other things to even notice she was talking about him.
The checkup today was a little inconclusive in some ways, and we're going back tomorrow for another exam with a more experienced ophthalmologist. But the ptosis has definitely started to interfere with the vision in Elijah's right eye, so it's looking like it will need to be surgically corrected. And it's possible that there has been some overall degeneration in his eyesight in the "good" eye as well. It sounds like glasses are in his future, at least to strengthen the right eye after the surgery, and possibly to help with vision in the left eye as well. Patching may also be ahead.
It's another bump in the road. Not major, but another reminder that our little one's body isn't typical. Another reminder that he may well continue to need a little higher than average medical attention, that he may need to treat his body with a little higher than average care, all his life long.
Stellan is back in the hospital again, and looking at another risky surgery. They're no longer talking about making it to 20 kg, they're talking about making it through the night.
His mom, Jennifer, writes, "[W]e simply want Stellan to survive this ordeal. If he ends up . . . pacemaker dependent for life, at least he'll have a life."
I've been in shoes that fit a lot like hers, just praying for life for my child.
I've been reading Indiana Girl's post on healthcare reform and the value of human life, with the classic quotation from Peter Singer:
"Governments implicitly place a dollar value on a human life when they decide how much is to be spent on health care programs and how much on other public goods that are not directed toward saving lives. The task of health care bureaucrats is then to get the best value for the resources they have been allocated. . . . As a first take, we might say that the good achieved by health care is the number of lives saved. But that is too crude. The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities."And it's reminded me of things I've been reading here, and here. I read with Stellan on my mind, and Elijah, and Makily, and S, and D, and M, and all the other "special needs" kids we know. I think of my friend R, waiting for a heart transplant, whose whole life has been bounded by hospitalizations, surgeries, and medications, and my brother-in-law, who is blind, and my Uncle Ronnie, whose Downs Syndrome did not end his life in his teens, as the doctors had predicted, but who lived well into his fifties, who lived to see and rejoice over his great-nephews.
If you want to talk about the most bang for your buck, Elijah should probably have been allowed to suffocate quietly to death at birth. In the first six months of his life, his hospital bills alone were hundreds of thousands of dollars past the million-dollar mark (and there were also the ambulance bills, the durable medical equipment bills, the perscription formula, the wound-care supplies, the enteral feeding supplies, and on and on). And his "quality" of life--though "normal" now--was arguable then. If we're talking about spending health care dollars most efficiently, my son probably shouldn't make the cut.
In his Time article, Peter Singer writes:
Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar. . . .Who in the community of the disabled does not desperately want to see a cure for disabilities? Which of us parents of children with special medical needs has not agonized over the sufferings of our children, and wished that it was within our power to stop those sufferings? No one would argue, I think, that life is more comfortable or easier, that "quality" of life is better for the disabled than for the able-bodied.
Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
But what of it? Mr. Singer introduces a false dichotomy: He supposes that because human beings (selfish beings that we are) would rather live a life free of pain, would rather live a life not fraught with difficulty, that it would be better for people not to live at all if they have to live in pain or with difficulty.
It's easy enough to take six months of life away from a hypothetical quadruplegic.
Elijah has come through his trial by fire relatively unscathed, thus far. Of the half-dozen or more times when he could easily (and in some cases, ought to have) sustained brain damage, he didn't. His remaining disabilities don't add up to make him much different from other three-year-olds, at this point.
But that isn't what makes him important. If he had died, those times when, by rights, he should have, if he had been profoundly brain damaged, and was wheelchair bound, and we were looking at a lifetime of tube feedings and diaper changes, it wouldn't make him less worth caring for now.
Elijah is worth caring for because his is a human life created by God, because he's a little picture of a facet of who God is, and because God has said He loves him--birth defects, scars, and all.
Once you get away from that clear, deep line in the sand, into the murky waters of utilitarianism who's to say which lives have the most value? Peter Singer? (He, whose grandparents were murdered in Hitler's concentration camps, really ought to know better.)
It's so easy to look at that hypothetical quadruplegic and say that her quality of life is so poor she really doesn't need to live another six months. What happens when the quadruplegic is your mother, or your sister, or your daughter--or yourself? And you want her to live, but the government agency doesn't think she's worth the money?
When government agencies are deciding who's worth spending health-care money on, they tend to want to kill people who want to live.
If, as Peter Singer argues, "Governments implicitly place a dollar value on a human life when they decide how much is to be spent on health care programs and how much on other public goods that are not directed toward saving lives," and "[t]he task of health care bureaucrats is then to get the best value for the resources they have been allocated. . . ." that is all the more reason to keep the government out of and away from health care as much as we possibly can.
People aren't a mass of hypotheticals. They're persons, individuals--like Elijah, God-created. They're not to be assigned a value through cost-benefit analysis.
We went home from the hospital on February 23rd--just short of three months after Elijah's birth--with a dizzying array of feeding pump, medications, syringes, formula, wound-care supplies.
Twenty-four-hours later, we were back in the hospital.
I was changing Elijah's diaper on the afternoon of our first day home, when I opened it to find it full of blood. We took him to the ER, and of course were readmitted. Two days later, the doctors had decided that the bleeding was probably due to a food intolerance or allergy--probably milk or soy protein--and they took him off my breastmilk and put him on non-dairy, non-soy formula.
I was crushed. I had been faithfully pumping around the clock for almost three months to provide him with milk instead of formula. During the times when he couldn't eat, I had been slowly building a supply of frozen milk to last us through the times, if any, when my milk supply dropped in the future, and all of that would be useless, as I'd been eating dairy products the whole time. And I had still been hoping against hope (because I kept getting conflicting information on the possibility of breastfeeding cleft-palate babies) that I'd be able to breast feed Elijah. If you've never struggled with low milk supply, or had to pump exclusively for more than a few days, I'm not sure you can understand how heart-breaking this was. To top it all off, Elijah didn't tolerate the formula well. His rate of digestion was much slower on it, and he started spitting up.
But it stopped the bleeding, and that was the most important thing. I cut all dairy and soy from my diet (that means a list of 90 things that you can't eat to look for on food labels, and no eating food that doesn't have a label) in hopes of being able to give him breast milk again after the toxic proteins were out of my system. We were discharged from the hospital again on February 27th
I shook him gently.
I dropped the phone and shook him as roughly as I dared. Dan. Dan! He's not breathing!
Dan whipped the car across three lanes of traffic and pulled into the nearest parking lot, a dialysis clinic not two minutes from the hospital campus. While I dialed 911 with shaking hands, Dan pulled Elijah from his carseat, and, unable to find a pulse, did CPR on the trunk of the car. Thank God for a husband whose professional background made performing CPR second nature, even with the incredible encumbrance of Elijah's distractors in the way. The ambulance drove past us twice, though I was jumping up and down on the corner, waving my arms. After everything, were we really going to lose him now?
Elijah started breathing again just as they put him in the ambulance. I rode with him back to the hospital, while Dan followed in the car, and met us in the ER. We were, of course, readmitted, and sent back to the PICU while they tried to figure out what had gone wrong.
When we made the move from Hospital One to Hospital Two, we moved out of the loaner RV in the Hospital One's parking lot, and in with Dan's aunt and uncle. I spent all day at the hospital, then came back to their home--restful is the only word I can think of that really describes it. The house was probably sixty or seventy years old, and had all the attendant charm--high ceilings, graceful trim, lots of wood-framed double-hung windows. We had the attic bedroom, wood-paneled and cork floored, with a lovely old rocking chair and a view of the neighbor's garden, and, blessing upon blessings, our own bathroom. His aunt and uncle were quiet, and respectful of the stress we were under, and didn't expect us to make small talk.
I was still pumping every two or three hours during the day, so I'd come back from the hospital in the evenings, eat a quick dinner--various people from our church network were providing food for us, bless them--and head up to our bedroom to pump, and just enjoy the stillness, and the view of the neighbor's garden out one of the windows. In the mornings I got up, pumped, rode the excercise bike in the basement, took a hot shower, read The Economist or something else equally mentally stimulating and totally divorced from my life of hospital rooms over breakfast, and then headed back to the hospital in time for my next pumping. I was in a daze, and always starting laundry and forgetting about it, and Dan's marvelous aunt would come along behind me and finish the laundry, and wash our dishes and offer me cocoa, and generally take care of me.
As the days went by, post-op, Elijah's swelling started to go down, and the placement of the vent became less precarious. They could move him, a little, without his sats dropping, and so were able to start gradually backing off on his sedation levels, so that he could start "waking up" a little. That was the good news.
Then there was the bad news. The risk of lung infections for patients on a ventilator is higher than average, and Elijah developed congestion. The culture showed the beginnings of pneumonia in one of his lungs, and he started a course of antibiotics, as well as breathing treatments where they thumped his little chest with a soft rubber cup to loosen the secretions. His IVs were failing right and left, and finding new places to put them was starting to be difficult, so they placed a PICC line in his leg. But Elijah was in the one percent that gets a blood clot from the placement of the PICC line, and it was a big one. They started him on blood-thinners to dissolve the clot, trying to find that delicate balance where they could dissolve the clot in his leg, but not destroy the clotting necessary for healing at his incision sites. And the date for pulling the vent kept sliding later and later. This increased the risk for his lungs, and threatened the need for placement of a central line (with its own attendant complications) to run the sedation meds through (a PICC line was no longer an option).
Finally, two weeks after Elijah's surgery, I was greeted by the doctor on morning rounds with, "Well, we have no bad news this morning." It really was a first. Elijah was successfully extubated on February 14, exactly two weeks from the surgery date, and, although they had a little trouble getting him to wake up enough to breath on his own (he was on high doses of narcotics for pain management) we managed to annoy him into continuing to breathe, and avoided reintubation. (His average breaths-per-minute pre-op were forty-five to fifty; post-extubation, we were having to work to keep him at eight to ten bpm.)
Two days later, he was breathing on his own, on room air (meaning no added oxygen) and satting in the nineties. His clot--which was so big that the hematologist had told us it would take three weeks before we even began to see diminution, and months before it was totally dissolved--was gone, just like that. Another miracle. And, after seventy-two days in ICU, Elijah was moved to the floor. We were looking at going home in less than a week, after learning to turn his distractors, do his wound care, and administer his medications.
In looking back over my mother's emails to friends who were praying for us at that time, I see that she was expecting that post--the one where she said we should be going home within a week--to be her second-to-last, updating folks on Elijah's condition. It makes me want to laugh, and cry at the same time.
Almost every time I walk into the kitchen and start clanking pans or bowls, I hear the thump-thump-thump of little feet (no pitter-patter in this house) and a plaintive voice asking, "Mama, can I help?" I am trying to get better at saying yes.
We made hummus and my friend J's chapattis day before yesterday (a little culturally confused, I know) and started sourdough bread last night after I finished blending a new batch of his feedings*. I was taking some pictures of Elijah kneading the bread last night so I could send them to Dan, and they reminded me of when I was a little girl, and my great-grandmother would let me "help" her make chocolate chip cookies, or cinnamon rolls. I loved it--and her. And that reminded me of baking with my dad when I was even younger. One of my earliest memories is of making pumpkin cookies with orange frosting for halloween, he teaching me how to scrape the sides of the mixing bowl with the spatula while the beaters were turning. I hope that Elijah and I are making sweet memories for him, just like Great-Grandma and Papa did for me.
*While I was blending feedings, Elijah was making baked dinosaur, using an empty pre-washed-spinach container for his covered baking dish, the seat of his high-chair for his oven, and the window-sill for a cooling rack. If you'll look to his right in the picture above, you can see one of the delicious dinosaurs cooling while he kneads the bread.
It makes me smile:
I have been having a hard time finding shoes that I like to go with it. I think these may be the ones, and have purchased them, being unable to find anything else I like even half as well at this time:
But I still feel uncertain. I'm not very good at shoes.
I had to twist Elijah's arm to get him to let me read it to him; he had perused the pictures on his own already, and didn't like the looks of the loud roaring. Once I promised not to really roar the roaring parts, he gave in.
And at the risk of sounding like a third-grade book report, I seriously recommend that you rush out and beg, borrow, or steal a copy (okay, okay, don't actually steal it) of this lovely book. Then, give it as a gift at baby showers and kids' birthday parties and and librarians' retirement parties, and . . . .
Last night, my phone went nuts. I could still receive calls, but the screen was useless, and I didn't know how much longer I'd even be able to receive calls. So after we picked up Elijah's milk this morning, we headed to the AT&T store to see if they could do anything for me.
The phone was beyond saving--and yes, it was the water damage. Grrrr. But they couldn't upgrade me to a new plan so I could get a new phone, because Dan was the primary name on our account. (Query: After almost seven years of marriage, with one deployment under our belts already, how have we not fixed this already?!) I'd have to call my husband, they said, and have him ask to have me added to the account as a whatever-they-call-it-that-can-change-things-about-the-account.
That sentence is on my list of Annoying Things About Deployments. "You have got to be kidding me," I said. "My husband is in Iraq and there is no way I can call him, and I have no way of knowing how long it will be until he calls me again."
The sales rep had me call AT&T's 1-800 number to see if, since I could give them the last four of Dan's social, they would add me to the account, but that was a no-go. At this point, I was starting to feel a little panicky. What do you mean you can't get me a new phone? What if I miss a call? The sales rep went and got his manager, and I heard him wrap up his explanation of the situation with, "We have to get her a phone." When the next set of things they tried didn't work, the sales rep stopped what he was doing with my phone, looked me right in the eye, and said, "I will do whatever I have to do to get this taken care of."
It turned out that he had spent four years in the Army as a diesel mechanic; he understood. He told me he was sorry that Dan gone--and not in the oh-you-poor-thing way that tends to set my teeth on edge--but that he really appreciated what he was doing, and he thanked me for staying with Dan and supporting him. I almost cried right there in the AT&T Corporate store.
And he did, indeed, find a way to get it taken care of. I left with a new phone, I did not have to drive an hour home to get my power-of-attorney and then drive an hour back to show it to them, and, in consequence, I didn't miss it when Dan called this afternoon. I wish there was a way to give that guy a positive write-up to his boss; he made what could have been a huge headache into a really encouraging experience.
We've been doing this for a year, now. We've got (very roughly speaking) six weeks left. Why is it still so hard? I feel like, with twelve months under my belt, six weeks really shouldn't feel like a long time to have to wait. But it does.
And really, that's because it is. Yes, we've come a long way, most of the way in fact. From a military perspective, six weeks is nothing. From a civilian perspective, six weeks is still a long time to be away from your husband. It's half of your kids' summer vacation, and longer than your average business trip. And sometimes the military's perspective isn't the healthiest or most realistic.
I know the end is close. But it doesn't seem close enough.
Amidst the sorrows of the way
Lord Jesus, teach my soul to pray
Let me taste Thy special grace
And run to Christ, my hiding place.
--Jars of Clay
Four jobs that I've had:
-Natural Sciences Library employee
-Wrangler at an equestrian summer camp
-High-school English correspondence course evaluator
Four television shows I like to watch:
(Would you believe I don't have a TV?)
Four places where I have vacationed:
-Driving tours of the CONUS (seriously--this three-week-eleven-state business is nothing new)
Four web pages I visit almost daily:
Four of my favorite foods:
-Meatballs and red potatoes with lingonberry jam
-Chupe de camarones
-Queen Victoria's favorite soup
-My homemade whole grain pitas with homemade hummus and spinach
(but, I never really met a food I didn't like)
Four places where I'd rather be right now:
-one particular conex in Iraq (you know, if I could teleport. . .)
If anyone else wants to borrow this, feel free.
Elijah has taken, lately, to making himself a mustache out of a bit of the paper-tape we use to keep his split gauze around his g-tube. He looks like a miniature Charlie Chaplin, and, especially since he frequently tapes his mouth shut, is quite comical. Both of his grandfathers wear a mustache, but Elijah's interest seems to have stemmed from my old china mustache cup, which has lately seen its turn in rotation as I try to make use of my tea-cup collection. He is fascinated by the mustache guard, asking me over and over again what it is, and why it’s there, perhaps amazed at the thought of a mustache so luxuriant it could require such a contraption.
The collection numbers an even twenty, now, my first a gift from my parents when I was twelve or thirteen, the most recent a present to myself, a souvenir from my sister’s college graduation trip. If it weren't for Dan, I think my cups would sit undisturbed on the walnut shelf my father made to house them; I would always be saving them for high, holy days or bonfire nights, and as most of those are attended by a whole passel of friends and relations, they require red plastic cups, not bone china. But Dan just uses them, making a special occasion out of Saturday mornings by setting the breakfast table with cups from my collection instead of the workaday mugs we use during the week. His favorite is the red toille, once part of my great-grandmother's every-day china. Mine is a thick, heavy cup with a thin sage stripe round the rim, which was once part of the china at the hospital where the same great-grandmother took her nurse’s training.
One cup came from a trip with my 4-H club in high-school, one is a perfect mate to a cup in my childhood-best-friend’s collection, and a set of three came from my high-school graduation trip. One was a wedding gift from my mother-in-law, and another she bought me before Dan and I were even engaged. The mustache cup came down, we think, from my great-grandfather's family; though he was himself clean-shaven, his Dunkard ancestors wore full beards.
I think my love of tea cups stems from a love of the tea ritual itself, which I’ve had since my mother bribed the five-year-old me into acquiring table manners by promising me high tea at the Empress Hotel if I could learn to acquit myself honorably thereat. The enchantment of that ceremony has stayed with me, deepened by a lifetime of “having tea.” On cold, wet winter afternoons, sitting around the fire, hands wrapped around our steaming mugs for warmth, arguing politics and philosophy with my parents, my sister, and my brothers; during lazy summer evenings, rocking in the porch swing and listening to the frog chorus; late at night, pouring out my worries and sorrows to my mother at the kitchen table—sharing a cup of tea. On our honeymoon, Dan took me to tea at the Empress again; at a mother’s day tea, I told my mother and sister that I was a mother.
I find the ceremony of having tea soothing—the shared understanding of proper behavior which simple etiquette brings—but beyond the ritual, I love the pause, the respite, the affirmation that small things, and beauty, and people matter. Every piece of my tea service has a story, a memory behind it. This pot was from my grandmother, this from my mother. Those spoons were from my sister. The tea cozy Dan bought me on our honeymoon, the tea trays were hand painted for my grandparents by a good friend, the little cream pitcher and sugar bowl were left me by my great-aunt and –uncle when they died. The things are pretty in themselves, but they’re all the more beautiful to me because of the memories they evoke—of the people who gave them to me, of the people I’ve used them with.
I had my mother over for tea today, a ploughman's lunch with homemade muffins and orange slices, and black tea. We talked, and ate, and just spent time together, without anything else on the agenda. It was very good.
The crowd was scattering away then, but Laura stood stock still. Suddenly she had a completely new thought. The Declaration and the song came together in her mind, and she thought: God is America's king.
She thought: Americans won't obey any king on earth. Americans are free. That means they have to obey their own conscience. No king bosses Pa; he has to boss himself. Why (she thought), when I am a little older, Pa and Ma will stop telling me what to do, and there isn't anyone else who has a right to give me orders. I will have to make myself be good.
Her whole mind seemed to be lighted up by that thought. This is what it means to be free. It means, you have to be good. "Our fathers' God, author of liberty--" The laws of Nature and of Nature's God endow you with a right to life and liberty. Then you have to keep the laws of God, for God's law is the only thing that gives you a right to be free.
--Laura Ingalls Wilder, Little Town on the Prairie
We got it sorted out, and now we have an appointment with all the right people in three weeks. She even got that ophthamology appointment moved up to later this month for me. And she got us scheduled with the feeding clinic, and put in a request for us to see the specific feeding therapist I wanted. It really turned out to be a fortuitous screw-up. And I get to put off the dreaded oral exam a little bit longer. Excellent.