Tuesday, June 27, 2006
So Far, So Good
Logan seems to be doing well. He's cracked open his eyes a bit, and all of his signs are where they want them.
Monday, June 26, 2006
Out and Okay
The surgeon just came in: the surgery was successful.
A huge, incredible relief.
He's still got a long way to go, but he's come this far.
A huge, incredible relief.
He's still got a long way to go, but he's come this far.
Surgery
A few minutes ago Logan went into surgery.
I'm reading Walker Percy's The Thanatos Syndrome faster than I've read a book. Then I have Neal Stephenson's Quicksilver and John Irving's Until I Find You at the ready. Some people apparently need to stare at a TV at a time like this; I can't stand it.
And listening to Bruce Springsteen, as if I've never heard him before. He's a comfort, and right now I can't tolerate anything else.
I'm rambling, obviously.
We deeply appreciate all of the prayers and positive thoughts.
I'm reading Walker Percy's The Thanatos Syndrome faster than I've read a book. Then I have Neal Stephenson's Quicksilver and John Irving's Until I Find You at the ready. Some people apparently need to stare at a TV at a time like this; I can't stand it.
And listening to Bruce Springsteen, as if I've never heard him before. He's a comfort, and right now I can't tolerate anything else.
I'm rambling, obviously.
We deeply appreciate all of the prayers and positive thoughts.
Sunday, June 25, 2006
Surgery Monday
Logan is scheduled for the arterial switch surgery early Monday afternoon. He will then have some rough days ahead of him as he recovers.
Friday, June 23, 2006
More Waiting
No surgery today due to the infection, and as we all know, not much happens at a hospital over the weekend unless it's an absolute emergency. So unless things take a turn for the worse, we're now looking at Monday at the earliest. He seems stable.
I dread the prospect of keeping myself occupied over the next several days. It's like eating when you have a bad cold; nothing tastes good.
For the most part I've adjusted to seeing Logan with all of the tubes in, but it still gets to me at times, especially when I realize how long it's been this time around.
I feel I should balance out yesterday's griping with some positive remarks about this hospital--and though I remain annoyed about the lack of a lactation room, the positives far outweigh the negatives. The PICU seems to run pretty tightly, and that's a good thing. His nurses have all seemed excellent (as they were where he was previously). And though I thought doctors at a larger city hospital would be more aloof and treat Logan like a number, that hasn't seemed to be the case. We've seen the surgeon several times and he's been both friendly and upfront, as well as quick to answer our questions as best he can.
And much of the facilities really are bedazzling, at least for Evan, and again, that's a good thing. There are numerous fish tanks around, a children's library, a very nice garden, model trains, and some kind of big Rube Goldberg device with Ping-Pong balls. So Evan likes exploring. And I imagine that it all does make a big difference to the kids who are hospitalized here.
I dread the prospect of keeping myself occupied over the next several days. It's like eating when you have a bad cold; nothing tastes good.
For the most part I've adjusted to seeing Logan with all of the tubes in, but it still gets to me at times, especially when I realize how long it's been this time around.
I feel I should balance out yesterday's griping with some positive remarks about this hospital--and though I remain annoyed about the lack of a lactation room, the positives far outweigh the negatives. The PICU seems to run pretty tightly, and that's a good thing. His nurses have all seemed excellent (as they were where he was previously). And though I thought doctors at a larger city hospital would be more aloof and treat Logan like a number, that hasn't seemed to be the case. We've seen the surgeon several times and he's been both friendly and upfront, as well as quick to answer our questions as best he can.
And much of the facilities really are bedazzling, at least for Evan, and again, that's a good thing. There are numerous fish tanks around, a children's library, a very nice garden, model trains, and some kind of big Rube Goldberg device with Ping-Pong balls. So Evan likes exploring. And I imagine that it all does make a big difference to the kids who are hospitalized here.
Thursday, June 22, 2006
The Suggestion Box
I hate to complain about this place. Logan seems to be receiving very attentive care. But here I go anyway.
This hospital is full of features intended to bedazzle. Kids, I suppose, are supposed to feel more comfortable if the elevators have kids' voices announcing what floor you've arrived on. That's the argument from the marketing department, anyway, who have to justify their existence.
Here's a brilliant marketing idea: put a lactation room in the PICU. I can't think that my wife is the only mother of a breastfeeding child who's ever been in the place. There's an infant right across from Evan's room.
The nurses told us that the only space available is in the room itself. They bring a divider in and let you pump in the corner. This could be a problem if there's an emergency and you're asked to leave. And now in Logan's case, we can't have a divider in the room because of his infection. And apparently Shannon can't use the NICU's room.
The previous hospital didn't have a room either, but the PICU was so cramped and overcrowded from what one can only assume was decades of insufficient infrastructure budgeting that we more or less took it in stride. Here, where one confronts bedazzling features around ever corner, it's very difficult to understand. There's apparently construction underway, and several people have speculated that a lactation room might be part of the construction, but it's just as likely that they might be building a Hall of Doctors, with talking animatronic physicians similar to Disney World's Hall of Presidents. I'm sure the kids will love it. Lacation room? Ewwwww. Find a corner somewhere.
Frankly it's enough to turn me into a militant feminist. I can't help but think that some male made the decision. I have to admit that, being male myself, the need for such a room might not have occurred to me. I know I would never have thought about it if I hadn't had kids. But there are televisions in every room, and at least one microwave in the waiting room. Food and TV we're good at.
I guess my wife could just whip out a boob and start pumping. Maybe that would create a scene and we'd get it resolved that way. But she's not the type to do that.
I do know that the hospital will hear from me about this. At length.
This hospital is full of features intended to bedazzle. Kids, I suppose, are supposed to feel more comfortable if the elevators have kids' voices announcing what floor you've arrived on. That's the argument from the marketing department, anyway, who have to justify their existence.
Here's a brilliant marketing idea: put a lactation room in the PICU. I can't think that my wife is the only mother of a breastfeeding child who's ever been in the place. There's an infant right across from Evan's room.
The nurses told us that the only space available is in the room itself. They bring a divider in and let you pump in the corner. This could be a problem if there's an emergency and you're asked to leave. And now in Logan's case, we can't have a divider in the room because of his infection. And apparently Shannon can't use the NICU's room.
The previous hospital didn't have a room either, but the PICU was so cramped and overcrowded from what one can only assume was decades of insufficient infrastructure budgeting that we more or less took it in stride. Here, where one confronts bedazzling features around ever corner, it's very difficult to understand. There's apparently construction underway, and several people have speculated that a lactation room might be part of the construction, but it's just as likely that they might be building a Hall of Doctors, with talking animatronic physicians similar to Disney World's Hall of Presidents. I'm sure the kids will love it. Lacation room? Ewwwww. Find a corner somewhere.
Frankly it's enough to turn me into a militant feminist. I can't help but think that some male made the decision. I have to admit that, being male myself, the need for such a room might not have occurred to me. I know I would never have thought about it if I hadn't had kids. But there are televisions in every room, and at least one microwave in the waiting room. Food and TV we're good at.
I guess my wife could just whip out a boob and start pumping. Maybe that would create a scene and we'd get it resolved that way. But she's not the type to do that.
I do know that the hospital will hear from me about this. At length.
Not Today
Logan seems to have an infection, so no surgery today, and very possibly not tomorrow, either. He's stable, at least.
More later.
I have wireless.
More later.
I have wireless.
Wednesday, June 21, 2006
Transfer
Logan is about to be transported by helicopter to St. Louis. He may very well have surgery tomorrow.
The insanity has reached a fever pitch.
The insanity has reached a fever pitch.
Tuesday, June 20, 2006
Crucial Point
It seems like what we went through today happened over several weeks and not just a little over 12 hours. I may have lost a year off my life just because of today.
There seems to be some agreement among the doctors here about to proceed. Without delving too much into the personalities involved, one line of thought is that Logan needs the arterial switch, or Jantene, procedure, and he needs it now (as in the next several days). The other line of thought is that the pulmonary hypertension increases the risks associated with the Jantene too much, so he should instead receive the artrial switch, or Mustard-Senning procedure, about a month from now when (if) the pressure on his lungs goes down. For reasons I don't really understand, the pulmonary hypertension has created a window of only a few days to go the arterial switch route; after that we can only do the atrial. It's all maddening.
We spent the morning listening to and considering opinions, and then I spent much of the rest of the day trying to get second opinions in St. Louis and Kansas City and doing a bit of uneducated research on my own. My wife spoke to one mother whose child had recently had the Senning and was now doing quite well. She then spoke to another mother who child had had the Jantene, and that child is doing very well.
My research this afternoon turned up what I thought I had already read: there are higher rates of longterm problems with patients who have had the atrial switch--not just with the heart, but developmental/learning problems and other things. That's one reason why the arterial switch seems to have become the procedure of choice--the "gold standard of transposition repair," as one website said. But as one doctor explained this morning, the arterial switch is relatively new, and most of those patients have not yet reached adulthood, so no one truly knows how well those patients will do in adulthood. But I've seen some fairly grim survival rates for the atrial, as opposed to the survival rates for the arterial--something like 96-97%, and I figure that at least a couple of those 3% were maybe run over by cars.
So until I know more, I feel like we're going to have to make a choice between a higher risk procedure offering a much better possible outcome, versus a perhaps lower risk procedure that has much greater chance for longterm problems. Not a good dilemma. But if we actually have a choice, I think I'd take the short-term risk that offers better long-term results. I know I'd choose that if the surgery were being performed on me. (Strangely, I didn't think of it that way until just now, as I'm writing this. But there's no doubt in my mind.)
I believe that Logan has received good care to this point, and I'm not going to start disliking a doctor simply because he tells me something I don't want to hear. The second and third opinions we're seeking may turn out the same, in which case we're likely to stay here. But if they're different we may be elsewhere in just a few days. And I'll be five years older.
P.S. I wish I could blog at the hospital; I don't have anything to read right now, and while I've been working on the Savant novel when I am able to concentrate (not so much anymore), it would be a nice distraction to be able to post about this difficult situation and research various procedures very quickly. Plus, there are work-related things I could take care of if need be. But no: apparently the university wireless is not available there and the hospital's wireless is restricted. I've tried both proper and "extra-proper" channels to see if I could just get a temporary key, and so far I've gotten nowhere.
There seems to be some agreement among the doctors here about to proceed. Without delving too much into the personalities involved, one line of thought is that Logan needs the arterial switch, or Jantene, procedure, and he needs it now (as in the next several days). The other line of thought is that the pulmonary hypertension increases the risks associated with the Jantene too much, so he should instead receive the artrial switch, or Mustard-Senning procedure, about a month from now when (if) the pressure on his lungs goes down. For reasons I don't really understand, the pulmonary hypertension has created a window of only a few days to go the arterial switch route; after that we can only do the atrial. It's all maddening.
We spent the morning listening to and considering opinions, and then I spent much of the rest of the day trying to get second opinions in St. Louis and Kansas City and doing a bit of uneducated research on my own. My wife spoke to one mother whose child had recently had the Senning and was now doing quite well. She then spoke to another mother who child had had the Jantene, and that child is doing very well.
My research this afternoon turned up what I thought I had already read: there are higher rates of longterm problems with patients who have had the atrial switch--not just with the heart, but developmental/learning problems and other things. That's one reason why the arterial switch seems to have become the procedure of choice--the "gold standard of transposition repair," as one website said. But as one doctor explained this morning, the arterial switch is relatively new, and most of those patients have not yet reached adulthood, so no one truly knows how well those patients will do in adulthood. But I've seen some fairly grim survival rates for the atrial, as opposed to the survival rates for the arterial--something like 96-97%, and I figure that at least a couple of those 3% were maybe run over by cars.
So until I know more, I feel like we're going to have to make a choice between a higher risk procedure offering a much better possible outcome, versus a perhaps lower risk procedure that has much greater chance for longterm problems. Not a good dilemma. But if we actually have a choice, I think I'd take the short-term risk that offers better long-term results. I know I'd choose that if the surgery were being performed on me. (Strangely, I didn't think of it that way until just now, as I'm writing this. But there's no doubt in my mind.)
I believe that Logan has received good care to this point, and I'm not going to start disliking a doctor simply because he tells me something I don't want to hear. The second and third opinions we're seeking may turn out the same, in which case we're likely to stay here. But if they're different we may be elsewhere in just a few days. And I'll be five years older.
P.S. I wish I could blog at the hospital; I don't have anything to read right now, and while I've been working on the Savant novel when I am able to concentrate (not so much anymore), it would be a nice distraction to be able to post about this difficult situation and research various procedures very quickly. Plus, there are work-related things I could take care of if need be. But no: apparently the university wireless is not available there and the hospital's wireless is restricted. I've tried both proper and "extra-proper" channels to see if I could just get a temporary key, and so far I've gotten nowhere.
Monday, June 19, 2006
Back to Crisis Mode
Three weeks of normal baby stuff, and then suddenly everything changes.
On Friday Logan started passing some little specks of blood, and by that evening we were in the hospital. The thinking was that the bleeding was being caused by the aspirin he was taking to keep his blood thin and passing well through the shunt. He might well have gone home from the doctor if his weight had not appeared a good bit less than the previous Friday. Once we got to the hospital, his weight turned out to be not less at all, and it seemed like he might just need an overnight stay to make sure his bleeding stopped.
But his blood oxygen readings were low. He received some oxygen, but when it was reduced, he couldn't maintain the readings he needed. So the pediatric surgeon ordered an echocardiogram, and that revealed that his atrial septal defect (ASD) (a hole in the wall between his left and right atria) was getting very small. On an otherwise normal child that would be a great thing, because it would mean the defect was sealing without surgery. But because the plumbing in Logan's heart is all screwed up, he actually needs the defect in order to survive until the next surgery; in fact, if the defect hadn't been there, one would have been created, providing there was sufficient time to do so.
So this morning Logan had the catheterization to widen the hole, a non-surgical procedure using a balloon. The procedure went well, but in the process the cardiologist discovered several things. One, the shunt that he received on May 1 is narrow at one end, reducing the blood flow. Two, he has pulmonary hypertension, a result of (as I understand it) the heart having to work harder because of the defects. These two factors combine to make the major surgery more urgent. The third thing they learned, however, is that the two ventricles are of equal size, and there is no stenosis (constriction) of his pulmonary artery, meaning that an arterial switch is perhaps the desired course of action; such an operation, if successful, would basically give Logan a normal functioning heart. The other alternative, which would be necessary if the left ventricle had remained small and/or the pulmonary artery was still small, would require two operations and leave him with only one side of the heart doing all of the pumping—not the ideal outcome.
The cardiologist thinks that Logan should stay in the hospital and undergo the arterial switch in the next several days. Unfortunately, the surgeon has been out of town throughout all that has happened in the last several days, but he’s returning tonight, so we’re very interested to hear what he wants to do. I’m concerned that Logan may be weakened by all this stress and not really up to such a major surgery that involves a heart and lung machine. But the alternative may be that he stays in the hospital for weeks.
So in the meantime he has two IVs, tubes down his nose and throat, and a catheter. At least he seems pretty much out of it. We, on the other hand, can do little but sit, wait, and worry.
On Friday Logan started passing some little specks of blood, and by that evening we were in the hospital. The thinking was that the bleeding was being caused by the aspirin he was taking to keep his blood thin and passing well through the shunt. He might well have gone home from the doctor if his weight had not appeared a good bit less than the previous Friday. Once we got to the hospital, his weight turned out to be not less at all, and it seemed like he might just need an overnight stay to make sure his bleeding stopped.
But his blood oxygen readings were low. He received some oxygen, but when it was reduced, he couldn't maintain the readings he needed. So the pediatric surgeon ordered an echocardiogram, and that revealed that his atrial septal defect (ASD) (a hole in the wall between his left and right atria) was getting very small. On an otherwise normal child that would be a great thing, because it would mean the defect was sealing without surgery. But because the plumbing in Logan's heart is all screwed up, he actually needs the defect in order to survive until the next surgery; in fact, if the defect hadn't been there, one would have been created, providing there was sufficient time to do so.
So this morning Logan had the catheterization to widen the hole, a non-surgical procedure using a balloon. The procedure went well, but in the process the cardiologist discovered several things. One, the shunt that he received on May 1 is narrow at one end, reducing the blood flow. Two, he has pulmonary hypertension, a result of (as I understand it) the heart having to work harder because of the defects. These two factors combine to make the major surgery more urgent. The third thing they learned, however, is that the two ventricles are of equal size, and there is no stenosis (constriction) of his pulmonary artery, meaning that an arterial switch is perhaps the desired course of action; such an operation, if successful, would basically give Logan a normal functioning heart. The other alternative, which would be necessary if the left ventricle had remained small and/or the pulmonary artery was still small, would require two operations and leave him with only one side of the heart doing all of the pumping—not the ideal outcome.
The cardiologist thinks that Logan should stay in the hospital and undergo the arterial switch in the next several days. Unfortunately, the surgeon has been out of town throughout all that has happened in the last several days, but he’s returning tonight, so we’re very interested to hear what he wants to do. I’m concerned that Logan may be weakened by all this stress and not really up to such a major surgery that involves a heart and lung machine. But the alternative may be that he stays in the hospital for weeks.
So in the meantime he has two IVs, tubes down his nose and throat, and a catheter. At least he seems pretty much out of it. We, on the other hand, can do little but sit, wait, and worry.
Monday, June 05, 2006
Logan Update
Logan's blood oxygen reading this morning was in the low 60s, lower than the 75-85% range he needs to have right now.
It's possible he may need another surgery for a new shunt before the next major surgery. I hope something else can be done.
Other than being a little pale, which he's always been, he looks good. Other than being a little cranky yesterday, he's been acting good, too. I think he may even be working on smiling.
He's growing, and that may be part of the problem. As he grows, that shunt gets proportionally smaller, which is why the shunt is only a stopgap measure.
On a brighter note, his echocardiogram indicated that his left ventricle and pulmonary artery had both grown, which means that he might possibly be able to have a single surgery in which the aorta and pulmonary arteries are transposed to where they're supposed to be. We won't know for a while yet if that's in the cards.
It's possible he may need another surgery for a new shunt before the next major surgery. I hope something else can be done.
Other than being a little pale, which he's always been, he looks good. Other than being a little cranky yesterday, he's been acting good, too. I think he may even be working on smiling.
He's growing, and that may be part of the problem. As he grows, that shunt gets proportionally smaller, which is why the shunt is only a stopgap measure.
On a brighter note, his echocardiogram indicated that his left ventricle and pulmonary artery had both grown, which means that he might possibly be able to have a single surgery in which the aorta and pulmonary arteries are transposed to where they're supposed to be. We won't know for a while yet if that's in the cards.
Friday, June 02, 2006
Holy Crap
I don’t know why I look at Drudge Report, but I do. And today Matt Drudge has a link to an L.A. Times story about the upcoming Superman movie Superman Returns, the beginning of what I suspect will be a determined effort on his part to undermine its box office, akin to his recent efforts on King Kong. He tried the same thing with that crap festival of a movie The Da Vinci Code, but once the movie started raking in cash his links mysteriously disappeared. I don’t know what his motivation is; maybe he just gets cranky when he can’t find any animal hoarder stories he obviously has a fetish for.
But anyway, the article itself is about the supposed gay appeal of Superman, and whether or not it will hurt the mainstream appeal of the film. Why is this an issue? Because John Duralde wrote “Superheroes—let’s face it—are totally hot” for a cover story in the “prominent national gay magazine” the Advocate.
Yep. That’s it.
If that’s all it takes to create a controversy and disturb sexually insecure straight guys, then gay people have a method whereby they can run every anti-gay official out of office. “Rick Santorum—let’s face it—is totally hot.” So long, Senator!
Of course, the plan would require stories about the quote in newspapers with apparently nothing better to print. Suggestion: start with the L.A. Times.
Hey, what about the gay appeal of football? Those uniforms are so tight, yet colorful, and you know gay guys must be excited when the quarterback lines up under center. Football is HOT, baby! So, will this "new" gay appeal harm the NFL? Will beer-bellied heteros feel uncomfortable with what had heretofore been their favorite pastime? What a story! What great reporting!
No: what a waste of trees and bandwidth. Hey, I know all about having to come up with stuff for a deadline, and since I don’t know him, I’ll give John Horn the benefit of the doubt and attribute his nonsense to a bad case of writer’s block and not some addlepated, self-important motivation to manufacture a controversy out of thin air. But that doesn’t excuse his editors, who let the damn thing see the light of day.
And here I am linking to the stupid article, which I guess undermines my point entirely, because I'm sure the Times couldn't care less how dumb they are so long as they're generating traffic.
But hey: I like Superman, I’ve always liked Superman, and I’m not going to stop now. Why would I care if some gay guy somewhere is turned on by Superman? That’s great, I guess. We all have our weird turn-ons. Some people even dig animal hoarders. You know, I like David Bowie, too, and he’s a lot fruitier than the Man of Steel. I think I’ll crank up “Lady Stardust” right now.
So unless I hear that the movie climaxes with Supes and Lex Luthor doing the ooga booga, I’m going to see it. And hell, I'll probably go see it even then.
But anyway, the article itself is about the supposed gay appeal of Superman, and whether or not it will hurt the mainstream appeal of the film. Why is this an issue? Because John Duralde wrote “Superheroes—let’s face it—are totally hot” for a cover story in the “prominent national gay magazine” the Advocate.
Yep. That’s it.
If that’s all it takes to create a controversy and disturb sexually insecure straight guys, then gay people have a method whereby they can run every anti-gay official out of office. “Rick Santorum—let’s face it—is totally hot.” So long, Senator!
Of course, the plan would require stories about the quote in newspapers with apparently nothing better to print. Suggestion: start with the L.A. Times.
Hey, what about the gay appeal of football? Those uniforms are so tight, yet colorful, and you know gay guys must be excited when the quarterback lines up under center. Football is HOT, baby! So, will this "new" gay appeal harm the NFL? Will beer-bellied heteros feel uncomfortable with what had heretofore been their favorite pastime? What a story! What great reporting!
No: what a waste of trees and bandwidth. Hey, I know all about having to come up with stuff for a deadline, and since I don’t know him, I’ll give John Horn the benefit of the doubt and attribute his nonsense to a bad case of writer’s block and not some addlepated, self-important motivation to manufacture a controversy out of thin air. But that doesn’t excuse his editors, who let the damn thing see the light of day.
And here I am linking to the stupid article, which I guess undermines my point entirely, because I'm sure the Times couldn't care less how dumb they are so long as they're generating traffic.
But hey: I like Superman, I’ve always liked Superman, and I’m not going to stop now. Why would I care if some gay guy somewhere is turned on by Superman? That’s great, I guess. We all have our weird turn-ons. Some people even dig animal hoarders. You know, I like David Bowie, too, and he’s a lot fruitier than the Man of Steel. I think I’ll crank up “Lady Stardust” right now.
So unless I hear that the movie climaxes with Supes and Lex Luthor doing the ooga booga, I’m going to see it. And hell, I'll probably go see it even then.
A Likely Fruitless Exercise
Somehow I managed to get myself roped into a project with two friends wherein we are each to write a screenplay by August 1 and then enter it into competitions.
I'm already behind, and I'm pretty sure I never actually agreed to it, so that will be my excuse if I don't finish on time. But I'm going to give it a shot. I need deadlines. And I'm lazy about submitting my work. If I don't ever submit anything, I'm no worse off than if I did, and I'm actually ahead on postage and printing. But whatever.
I'm already behind, and I'm pretty sure I never actually agreed to it, so that will be my excuse if I don't finish on time. But I'm going to give it a shot. I need deadlines. And I'm lazy about submitting my work. If I don't ever submit anything, I'm no worse off than if I did, and I'm actually ahead on postage and printing. But whatever.
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