Archive for March, 2011
Yesterday marked the T-minus 3 week mark. Gabriel dumps the permanent fiberglass pants on April 4.
We’ve gotten into a basic holding pattern now. The rash is under control but not eliminated. It doesn’t appear to hurt him. I’ll have Jeanette do a guest post on her experiences with various diaper-rash creams, but whatever she’s doing, it’s been successful.
The cast is damp, but not soaking. We’ve used a cool/warm hairdryer to dry off the cast and get some airflow going, and though Gabriel hates it when Jeanette does it, he’ll put up with it, and he doesn’t seem to mind it when I do it. Big problem there is that the noise of it wipes out most conversation in the local area. But we can deal for half an hour a day.
And the big news is that the bills are continuing to roll in. We have a decent estimate now of the totality of the damage, and it’s going to be heavy, but not crippling. We will probably be a bit over $10,000 total gross bill, though we’ll see when the ambulance bill arrives. We got the massive $5500 whack from Primary Children’s the other day, and Jeanette has still not gotten over the line-by-line insanity of that. More detail coming in a subsequent post.
The bottom line is that while we won’t be able to pay it all off in one chunk, we will probably be able to allocate funds to pay it every month, depending on how those negotiations go. Several of you have offered your skills in this area, and we are hugely grateful for this and will certainly accept your offer, once we have everything in hand.
Gabriel isn’t sleeping great – last night he did his usual 2 hour fit, which our home-for-Spring-Break son eventually terminated, God bless him – but he’s sleeping fairly well, so we can, again, deal with it. He goes down better for me than for Jeanette, which is a great thing for her.
He’s also getting outside now that the weather is okay. We took our weekly family walk Sunday and Gabriel went with us in the stroller. We’ve tried wagons, big strollers, all sorts of things, and he likes the tiny little umbrella stroller best. No idea why. It isn’t sensible, but there you go. He loves being outside. We can also wrestle with him some now, which he likes, and even hang him upside down by the bar between his legs, which I’ll have to get a photo of.
Note: the hospital staff told us not to lift him by the bar. Then they told us they had to tell us that, and that since you couldn’t get the bar off with a chainsaw, we might as well go ahead. If anything happens to Gabriel, it is not their fault.
Dozens of you have told us you’re praying for us and sending peace and patience our way. It’s being received. You all have some serious Karma built up. We love you and can’t possibly describe to you how wonderful it feels to be the recipients of so much goodwill and love. What wonderful friends you are. How amazed we are by every one of you.
We knew that this injury was going to change all sorts of things in our lives, but no matter what we thought, we weren’t prepared for the reality. Maybe, I’m working on this idea, you are NEVER prepared for the reality. I wasn’t prepared for children, I can tell you, and we had 9 months lead time to work on that. But that’s probably a post for another time.
Gabriel is not a sedentary child. He runs around everywhere, like a lot of two-year-olds. Sitting still is hard for him, but he’ll do it – fortunately he likes TV, especially basketball and kids shows on KBYU. Apropos of this, in the hope that it will be of benefit to other parents, here are some short reviews of a few of the possibilities:
Word Girl: Cute show, animated in that style that you see so much of these days, where people use computers that could launch the Space Shuttle to make animation that looks like it was created by a 4-year-old. It’s not heavy on words, despite the title. Reminded me a lot of Power Puff Girls, and I don’t mean that in a good way. We use this one to put Gabriel to sleep on hard days.
Word World: Gabriel’s favorite. I like this one entirely because of that. It IS clever. Everything in the world is made up of words, and the main characters, a sheep, a duck, and a pig, with assorted hangers-on like bear and ant, go around having adventures and fixing things by changing letters around. I find it unwatchable, myself, but as I say, this is the favorite. Episodes available on Netflix streamed over the web. Thank goodness.
Super Why: I don’t even know what to say about this show. Part of me appreciates the cleverness of the concept, taking little animated kids (this show’s animation is actually quite professional 3-D) and turning them into the Super Readers, so they can go solve problems by learning to read. Part of me thinks the show is the single most annoying thing I’ve ever seen, because it’s one of those incredibly patronizing shows that asks your kid to “interact” with the kids on the screen, where they pause, ask you to say your name, look at you and ask you questions, all that. But I hear my four-year-old talking to the TV and naming off letters and reading words along with the show. That’s not nothing, as my favorite TV character once said. Watch out for the jingles (of which there are several hundred). They will get stuck in your head. This is not something to wish for.
The Cat in the Hat Knows a Lot about That: I’m confessing. I love this show. Most Seussian knockoffs (this is even worse for Milne/Pooh knockoffs, which are universally awful in almost every respect) don’t work because the writers aren’t capable of being even half as clever as Geisel was, but they imitate the style, and that gives me a rash, sort of like Vanilla Ice rapping. But this one does it the other way around, going for clever first and style second. It doesn’t try to rhyme all the time – face it, Geisel was a master at this, and there are few to match him – but it preserves the whimsical style without attempting to make the show as if Seuss wrote it. They do learn interesting things, and if I don’t hold much with adventure being the point of existence – a Jedi craves not these things, if I recall correctly – it’s entertaining and I find it eminently watchable, a significant bonus.
Dinosaur Train: I’ve never been able to get through a single episode of this (“one, two, three toes! It must be a Therapod!” Seriously?). But my kids love it. It’s not offensive, I just don’t get it, except the part where the real-life paleontologist comes out and explains that we don’t actually know anything at all about any of the creatures we’re animating during the show. I like that part. And the jingle is catchy, but doesn’t grate. A real bonus.
Sid the Science Kid: Cannot. Watch. We turn it off. Maybe the kids would like it, but we’re not going to find out.
I’d love to hear yours. I know my sister loved Phineas and Ferb, but we don’t get into Disney or Cartoon Network shows here. Except for Boomerang, because of Tom and Jerry, which for some reason my kids could watch all day.
Gabriel has a flaming “diaper” rash, which is not in the place his diapers go. It’s in the surrounding area under the cast, where air doesn’t circulate and the cast is wet and slimy. As hard as we try to keep it dry, it’s just impossible. We have been doing the following:
- augmenting the diaper with a dry washcloth to add additional absorbency
- using two kinds of diaper rash ointment in alternating 6-10 hour shifts
- drying the cast as best we can by aiming a cool hairdryer into the open parts
- letting him lie on his stomach for a half hour a few times a day
This seems to be helping. It’s getting better, though I doubt that it will come all better until the cast comes off. He’s not in any pain from the broken leg anymore, so he can lie on his stomach without pain, but not without eventual discomfort. Keeping crumbs out of his cast is a difficulty as well, though not as difficult as we thought it might be, because he hardly eats.
And that’s a problem as well, that we’re not sure how to fix. Gabriel doesn’t want to eat much. We get a few bites of things into him, but he’s done fast. He’s eating less than half what he used to (although he was always a picky eater). He has good energy, though, and seems good.
He is also actually sleeping. Two nights in a row, all through the night. He won’t sleep in his bed upstairs, so we end up with him down in his spot on the couch (now fortified with a plastic mattress pad), but at least he’s sleeping and Jeanette and I are feeling a bit more normal. I’m pretty sure the rash was the thing that was making him sleep poorly. We couldn’t see it, because for two weeks he couldn’t really move at all because of the pain from the leg. So I suppose it was inevitable, but it still made us feel like horrible parents.
I wouldn’t trade this. I get great time holding Gabriel while Jeanette does his diaper and washes him. It’s a blessed time for me, in spite of it all. Or perhaps because of it all. Have to think about that one, too.
With only two exceptions, and those are colored by the “necessity” of uncovering abuse where it doesn’t exist, every single person we’ve dealt with has been absolutely great. Professional, competent, kind, even gentle.
- The ER staff at American Fork Hospital were exceedingly gentle with Gabriel when they took care of him there. He was distraught, it was late, everyone was tired, but they splinted his leg with great care, and when they pricked him for his line, they were supremely careful of him and tried everything to help him be comfortable.
- The ambulance paramedics offered several things to help Gabriel be comfortable, and allowed Jeanette to ride with him to the hospital. They were obviously sensible of the fact that this was a bad situation for us, and did what they could to make it better.
- The Trauma staff at Primary Children’s Hospital could hardly have been more courteous or kind to us. They were faster than advertised at nearly everything, and we ended up leaving there a couple hours sooner than I expected.
- When it was time to go for Gabriel’s checkup after a week (yep, we’ve made it a week), instead of making us come all the way to upper downtown Salt Lake, they let us go to Riverton instead, about 30 miles closer to home. They’ve given us suggestions for cleaning and de-smellifying the cast, which have been somewhat helpful.
- When we were coming to pick up the bill from AF Hospital, because the lady knew we’d have to be quick about it, she offered to bring the bill to the curb and hand it to us instead of making us come in, so that we could get back to Gabriel faster. This offer by itself tells you a great deal about the people that work there.
Our impression of the medical system has bee greatly altered by these and other experiences. We know that as messed up as the system itself is, that it is staffed by people that are absolutely the best in the world at what they do. More than that, they’re great people. In the days that follow, when I am proposing possible solutions to the medical mess the country is in, I want to make very sure that I’m clear about one thing: I don’t blame the people that are inside the system. Few to none of them have anything to do with how we got where we currently are, and it is entirely possible that some of them would be hurt in the short term by what I think we have to do to fix it. Such is not my intent, but I don’t think that anyone is going to come out of this unscathed, anyway.
For now, a hearty thanks to all of the many people that have helped us by performing jobs for us that we cannot perform for ourselves. We all thank you and are very grateful for you.
Gabriel slept in a bed in his old room last night, the crib having been dismantled. He went to sleep far, far better than he ever has, and although he did wake up a couple of times (well, okay, six or eight times) between 12:30 and 4, he slept okay before that and after that. I haven’t been home today, so I don’t have a report on how he’s done after that much sleep, but last night Jeanette and I did get more sleep than we have been getting, and in our own bed, too, so that’s not nothing.
Melatonin, in response to several recommendations, has been procured, and we’re going to give that a shot as well, and see if it helps him settle.
We got Gabriel up and sat him near the table. It required four telephone books and two bungee cords, and I doubt very much if this arrangement would meet any federal safety standard, but as you can see, he loved it. Halelujah, it was like having our son back again.
I’m a small businessman. Have been for pretty much the whole of my life. The largest organization I’ve ever worked for, since I left the employ of BYU when I graduated, was a presidential campaign, which technically has a couple of hundred employees but functionally has less than 20. I currently run a branch of a mortgage company which has a varying number of loan officers, never (so far) exceeding 5. I think of it as my own company, and I run it that way. I have 20 years of small-business experience in several different industries, and I’ve been in leadership of the local Chamber of Commerce for a good while, which gives me that much more contact with all sorts of businesses large and small.
This thing with Gabriel has put me in contact with a huge number of enterprises that I’ve never had any dealings with before. One thing that has absolutely rocked me is the whole hospital/health care thing. Hospitals, I discover to my shock, are not businesses.
I’m talking about all hospitals, even nonprofit hospitals, which are many, because honestly there isn’t much difference between a nonprofit enterprise and a for-profit enterprise, in terms of how it operates. Where the money comes from, yes, but otherwise no. There are certain characteristics of businesses that hospitals lack in entirety. One is a general connection between profit motive and sales. Another is a cost basis. Since I’m dealing with those up close and personal right now, those are all I’ll address, but there are more.
Here’s a core sample of the insanity currently running rampant in hospitals, and what you will see when you go there. This list isn’t exhaustive, and it is, by necessity, restricted mainly to my experience with my child, but I’m told it isn’t atypical in any respect.
No matter what it is you’re there for, through the whole process, every time you ask about how much something costs, you’ll get a blank stare. This means two things:
- It means that you’re a heartless bastard that cares more about money than his child. This is a monstrous accusation, but it was leveled at me several times. It’s going to get worse, I’m certain, because I’m going to keep worrying this point. While it is laudable and noble to put the life and health of a person above financial considerations, the fact is that no one’s life and health are beyond financial considerations. Gabriel does not exist in a vacuum. He is one of ten people in the family. Thousands of dollars spent on his care means thousands of dollars less to spend on the care of the other seven children in the family. It just does. One thing impacts the other. There is not an infinite and unending supply of money.
This is not only poorly understood, even by adults, it is actively sneered at as being unworthy of consideration. This leads to union protestors in Wisconsin, among other things, that seem to think that there is a bottomless fountain of money to pay for whatever they want. There isn’t. Money that is forked over by the state to pay for first-dollar medical coverage is money that cannot be spent on roads, or schools, or policemen. There are tradeoffs. We’re starting to see some of those on a state and federal level.
They’re much easier to see on a personal level, because the amounts are not hidden by billions of other dollars of spending. When they put a morphine drip in my son’s arm, they’re taking away money I need for car insurance. When they transport him 50 miles by ambulance, they’re wiping out my ability to makes six months of mortgage payments. I see the tradeoffs everywhere, and though sometimes I might be willing to make those sacrifices, I’m never given the opportunity to decide. Once you’re in the system, it is assumed that you want every possible convenience, even if the truth is that you’d prefer to eat next month, and you’d be willing to forgo heated blankets to make sure you could.
2. It means – and as a businessman, this was the most incredible to me – that nobody knows how to answer your question. Yes, the staff is aware that things cost money; what they’re not aware of is how much. They can’t tell you, because they don’t know. You book the OR for a surgical procedure, there are seven hundred pieces of that procedure and nobody – absolutely no one – knows what they all cost. Most of the hospital people don’t even know what THEY cost, except in hourly or annual terms.
So it isn’t as simple as getting a handle on what I’m paying for, even, because nobody can tell me even if they didn’t think I should be shot for asking. Because the medical billing is routinely handled by another department, and that department usually send the bill to a monstrous, faceless corporation that will write checks without thinking about it (we call this “insurance” as if that’s what it really is), and THAT corporation is getting its money from another corporation (we call this an “employer”), that takes medical insurance premiums as part of a “benefits package” that has half a dozen other moving parts, we have divorced the consumer from the consumption to such a degree that normal free-market cost controls are absent. Try this on:
You run a grocery store. You have to pay for meat, then re-sell it. The meat comes to you with no price tag. How do you know how much to charge for it? You can’t know. You can find out what people will pay, simply by putting the meat out there at $50 a pound and dropping the price until some of it sells. But what if every grocery store has the same problem, and they all sell meat for $50 a pound? Oh, wait, it’s worse. Because the people that come in and buy the meat don’t pay for it. They pay a grocery insurance premium increasingly (and with single-payer programs, known as socialized medicine, completely) divorced from how much meat they actually buy. In consequence, they buy all the meat they can, no matter how much it costs (which, as I said before, they can’t know even if they’re curious). When the grocery premium goes up, it goes up for everyone, whether they bought meat at all. And there you have the US medical billing system. Absolutely guaranteed to drive up costs. You couldn’t have designed a system that would do it better.
The hospital sells all sorts of things under the heading of “care”. In fact, EVERYTHING the hospital does as “care” sells me something that I have to buy. Rarely, exceptionally rarely, am I given any choice. Sticking with the grocery analogy, I am required to have carrots if I have beef. Never mind if I want to have green beans instead (although if I want them in addition, that can sometimes be arranged). The grocery store has determined that in my best interests, I have to have carrots. So I get them. They are placed in my cart. And I get to take them home, while the grocery store figures out what to charge me for them. This isn’t a business. I know business when I see it. It isn’t a charity. I know those things as well. This is something…else. I don’t honestly know what this is.
What is the actual cost of an MRI? I mean, the real, amortized cost of the procedure to the medical institution so that it can recoup the value of the machine during its useful life. No. One. Knows. How is this possible? A construction company knows to the penny how much it has to charge in order to meet its costs, including replacing equipment when it wears out. A copy store knows that it has to charge a certain amount for copies in order to cover toner, paper, and wear on the machine. But a hospital doesn’t know how much to charge for basic medical procedures? No. It doesn’t. There are no pricing signals.
This does not, however, make the costs go away. What happens is one of two things: either the costs express themselves through the “insurance” system or they express themselves in rationing. There’s no other way. If there isn’t enough meat to go around, then either the race is to the strong and the lucky, or you develop a lottery system, or both. See National Health_Great Britain. It’s simply the way things are. No politician, no demagogue, no think tank, no well-intentioned billionaire can make these things not be true. If the new health care law restricts insurance premium increases – and it does – then the artificial constraints placed on price increases will mean rationing of care. Period. You can stand in the rain, or you can stand under an umbrella, but if you stand in the rain you WILL get wet.
This is the outline of the problem. I’d outline a possible solution, but I’m tired and I bet you are, too.
Gabriel isn’t sleeping. I mean, he sleeps, a little, but he never sleeps more than an hour or so at a stretch, and last night he cried for about 2 hours starting at 10pm and going to midnight before he finally fell asleep, then he woke up every hour or so for the rest of the night. Nicholas did his best to help Jeanette and I get some rest, but eventually at 2 I ended up down there with him until morning. Jeanette, because it was closing night for my play, had him for the Hell Watch of 8-11pm. I’d adore suggestions that did not involve powerful narcotics. I’m starting to think I’ll drop that condition here in another day or so.
We are literally brought to tears by the generosity of our friends, and even our casual acquaintances. We’ve seen Paypal money almost every day for a while now, in all sorts of amounts, each appreciated as much as every other. We’ve gotten baskets and packages of toys and food. There’s some discussion of a benefit concert, a family fundraising dance, bake sales, all kinds of things. I can’t possibly express to you what this means to us. It’s more than the money – though as those bills roll in, that’s becoming critical – it’s knowing that so many of you are praying for us or, as my good friend Sara says, sending peace and patience our way. We feel it. We rely on it. What a miracle you all are. May God bless you tenfold, as He has promised to do.
Since today we got to talk about how screwed up the medical system is, tomorrow I’ll tell you how unutterably fabulous the medical people are, and I mean that sincerely.