Without further a-do...
I never realized I was a corporation until now. Mom to an aspie married to a hubby with Arnold Chiari. A proud socialist liberal, wild views, wild posts, sometimes boring, sometimes offensive, but always real.
Showing posts with label decompression surgery. Show all posts
Showing posts with label decompression surgery. Show all posts
Sunday, July 24, 2011
Zipperheads
I updated an older post with images of my husband's Chiari scar a month post-op, however, I feel for the sake of Chiari Awareness the images warrant their own post. You may copy these images for personal and public use. I just ask that you do not alter the images or hot-link them from me.
Without further a-do...
Without further a-do...
Thursday, July 14, 2011
For the love of Chiari: An Update
When my husband does something, he does it right!
Chiari Malformations are so intricate, its amazes me. First, the mere ability to survive (and survive well), then the powers of the brain (as in my hubby is still as sharp as a tack) following that all up with incredible pain (and still being able to keep his cool). Okay, maybe this is what my hubby so awesome, despite Chiari.
He goes in for lots of scans next week. We'll both be glad when these are done because we will find out if he has a slow leak or not. If so, then its more surgery... if not, its back to recovery as usual. And care can be handed over to the neurologist-- meaning no more two hour drives to see the surgeon. It also means he'll be able to get back to work before summer is over. My poor man is chomping at the bit to get back into the swing of things.
In the meantime, we are exercising his reflexes and brain with a variety of video games. We are getting out of the house, he's driving a little and getting to run errands (yay, because I'm so sick of visiting Walgreens every single day). We are also hoping he gets cleared for more strenuous activities, like swimming and sex. (sex, okay, we like to have sex!)
The kid is feeling a bit more settled. I am very proud of the way he's handled himself during this whole process. It's a lot to ask of a little one, especially with autism. We have used all those coping skills and learned new ones.
One day, I'll have more time to go over all things Chiari, but for now, we have a rare moment to enjoy a bad movie and pizza sans kid. Oh, and tomorrow my husband goes into the next year of his life thanks to some really amazing doctors, awesome family and super friends. Cheers!
Chiari Malformations are so intricate, its amazes me. First, the mere ability to survive (and survive well), then the powers of the brain (as in my hubby is still as sharp as a tack) following that all up with incredible pain (and still being able to keep his cool). Okay, maybe this is what my hubby so awesome, despite Chiari.
He goes in for lots of scans next week. We'll both be glad when these are done because we will find out if he has a slow leak or not. If so, then its more surgery... if not, its back to recovery as usual. And care can be handed over to the neurologist-- meaning no more two hour drives to see the surgeon. It also means he'll be able to get back to work before summer is over. My poor man is chomping at the bit to get back into the swing of things.
In the meantime, we are exercising his reflexes and brain with a variety of video games. We are getting out of the house, he's driving a little and getting to run errands (yay, because I'm so sick of visiting Walgreens every single day). We are also hoping he gets cleared for more strenuous activities, like swimming and sex. (sex, okay, we like to have sex!)
The kid is feeling a bit more settled. I am very proud of the way he's handled himself during this whole process. It's a lot to ask of a little one, especially with autism. We have used all those coping skills and learned new ones.
One day, I'll have more time to go over all things Chiari, but for now, we have a rare moment to enjoy a bad movie and pizza sans kid. Oh, and tomorrow my husband goes into the next year of his life thanks to some really amazing doctors, awesome family and super friends. Cheers!
Wednesday, June 22, 2011
Not a Zipperhead
I am completely amazed at the hubby's scar from his Chiari correction surgery:
I may be reposting this, so forgive me, but we've been busy with family and doctor's appointments. At said doctor's appointments, my husband's scar is always admired. I thought I'd share with you the non-traditional zipperhead scar.
Saturday, June 4, 2011
Dr. Rudi and the post op follow up
Dr. Rudi isn't really a doctor, but a Physician's Assistant. I don't mind because in my experience, they have a better bedside manner. Dr. Rudi didn't make a great first impression on my when we went for the hubby's pre-operative appointment, except when I stumped him with my questions, he got the surgeon to talk to us.
The poor guy looks like he's a kid fresh out of the sandbox. I expected to see him with a sand shovel in his hand and juice box in the other. Okay, maybe that's an exaggeration. He is tall, his facial features are kinda mature, too. He probably plays Call of Duty with his roommates at night.
We were definitely his first Chiari case and an exercise in learning for his young mind. At our first meeting, Dr. Rudi certainly lacked the confidence that experience brings. On our second meeting, he had a little more confidence in his skills. I told the hubby he must have been brushing up since we saw last him.
I still had to lend him a hand. The hubby complained of feeling "disjointed", like he was watching the movie that was his life. Dr. Rudi had a hard time with this one. He gave one reason for that that seemed very vague and we watched his confidence plummet. I felt bad for the poor guy, so I chimed in with a timely question: "Couldn't the pro-longed headache cause that sort of sensation?".
I could have been a brat because I was in that mood (the hubby and I a tense debate over pantyhose, mysoginy and the workplace in the house we waited to be seen). But Dr. Rudi's demeanor was somewhat disarming. The fact that he remembered my husband's case and seemed to have devoted time to it made me empathetic to the whole experience. The fact that he apologized for our wait (They had to do emergency surgery, which we both understood and appreciated because it could have been my husband in that emergency situation) and for my husband having to go to the ER was extremely uncessary, but really nice. Brattiness wouldn't have done anyone any good.
Dr. Rudi said everything looked good and sounded normal. He explained that they used the pericardium because they found that the mesh leaked too often. While donor tissue may take longer to heal and may have issues, those issues are less severe than cerebral-spinal fluid leak. That was information I didn't know, so score one on patient education.
The hubby was prescribed some Prednisone to help relieve the inflammation which in turn will help to reduce the headaches. Dr. Rudi, unbeknownst to us, asked the ER to administer these to the hubby last week touting the steroids importance in reducing pressure on the brain. It was very disappointing to learn the ER failed us.
Hubby also got a new prescription for pain meds, but was asked to try to stretch out the dosage, which he is trying to do. The unfortunate part is now that he has less of a headache, he has more neck pain. No surprise between the way he slept last night and the fact that he had all his neck muscles sliced apart.
The recovery continues. I'm hoping we are in phase three now: Relief from headaches, larger appetite and more activity. Our next appointment is in month. Where we go from there I have no idea. He will see the actual surgeon at that appointment, but it would be nice if he sees him with Dr. Rudi. I've started to like this kid. He is going to be great at what he does someday.
The poor guy looks like he's a kid fresh out of the sandbox. I expected to see him with a sand shovel in his hand and juice box in the other. Okay, maybe that's an exaggeration. He is tall, his facial features are kinda mature, too. He probably plays Call of Duty with his roommates at night.
We were definitely his first Chiari case and an exercise in learning for his young mind. At our first meeting, Dr. Rudi certainly lacked the confidence that experience brings. On our second meeting, he had a little more confidence in his skills. I told the hubby he must have been brushing up since we saw last him.
I still had to lend him a hand. The hubby complained of feeling "disjointed", like he was watching the movie that was his life. Dr. Rudi had a hard time with this one. He gave one reason for that that seemed very vague and we watched his confidence plummet. I felt bad for the poor guy, so I chimed in with a timely question: "Couldn't the pro-longed headache cause that sort of sensation?".
I could have been a brat because I was in that mood (the hubby and I a tense debate over pantyhose, mysoginy and the workplace in the house we waited to be seen). But Dr. Rudi's demeanor was somewhat disarming. The fact that he remembered my husband's case and seemed to have devoted time to it made me empathetic to the whole experience. The fact that he apologized for our wait (They had to do emergency surgery, which we both understood and appreciated because it could have been my husband in that emergency situation) and for my husband having to go to the ER was extremely uncessary, but really nice. Brattiness wouldn't have done anyone any good.
Dr. Rudi said everything looked good and sounded normal. He explained that they used the pericardium because they found that the mesh leaked too often. While donor tissue may take longer to heal and may have issues, those issues are less severe than cerebral-spinal fluid leak. That was information I didn't know, so score one on patient education.
The hubby was prescribed some Prednisone to help relieve the inflammation which in turn will help to reduce the headaches. Dr. Rudi, unbeknownst to us, asked the ER to administer these to the hubby last week touting the steroids importance in reducing pressure on the brain. It was very disappointing to learn the ER failed us.
Hubby also got a new prescription for pain meds, but was asked to try to stretch out the dosage, which he is trying to do. The unfortunate part is now that he has less of a headache, he has more neck pain. No surprise between the way he slept last night and the fact that he had all his neck muscles sliced apart.
The recovery continues. I'm hoping we are in phase three now: Relief from headaches, larger appetite and more activity. Our next appointment is in month. Where we go from there I have no idea. He will see the actual surgeon at that appointment, but it would be nice if he sees him with Dr. Rudi. I've started to like this kid. He is going to be great at what he does someday.
Saturday, May 28, 2011
The Surgery: Chopping up my man & more
[[WARNING If you're squeamish, you might want to skip this post. It's not graphic per se, but its very specific in defining brain surgery. I had a hard time writing it, so it might be hard to read it.]]
While I have time, let me tell what they did my husband. I have a hard time thinking about it because its gives me the heebie-jeebies (did spell that correctly?). It's also absolutely amazing. Who thinks up this stuff? I thank god that they do, but it still blows my mind (and it's blowing my husband's mind literally!).
This is the sum of all parts, to the best of my knowledge. None of this has been easy to understand. The medical dictionary has been my friend the past two months. I've done so much reading, questioning and explaining that I could probably start work as a doctor tomorrow-- except I don't like people meat. Blood is fine, not an issue for me at all, but get below the skin and I can't tolerate it (I make my husband tell me "when it's over" when we watch anything that has any sorta "gore"... I shut my eyes and cover my face.):
First, they had to dissect the muscles at the base of the skull to the C1 vertebrate. Apparently that in itself takes a lot of work as that area of the body contains a lot of muscle. I jokingly asked the surgeon if I could still whap the husband upside the head (or in that area), to which the surgeon replied a hearty yes- I could hit him there as much as I liked because the muscles give adequate cushioning.
The doctors then shave the bone at the base of the skull until its the thickness of an egg shell. They carefully take out that thinned back portion of the skull. My husbands says it feels like they took four inches off his skull, but my guess is its less than that-- it just feels that way to him. That part of the operation I think is called a suboccipital decompressive craniectomy. Now that's a name to chew on.
Either before or after the above, a temporary shunt was put in my husband to drain away all of his spinal fluid and maybe cerebral fluid (I'm not sure). This allows room for everything messed with, including the brain, to go through the inflammation that occurs during the healing process. Without this part, his head would implode after surgery and his brain would be literally crushed or the brain stem... not something to mess with, but it's part of why he's had the world's worst headache for the past two weeks.
The surgeons then doa C1 laminectomy, where they basically do that bone shaving thing to the outer bone of the C1 vertebrate. This just allows more room for my husband's big brain. And probably helps its juices all go in the right places. I don't know for sure.
Next came the duraplasty. I think that's where they opened up the covering of the brain. The rockstar doctor said he'd peak at the brain at this time to remove any adhesions (any area of brain matter that was damaged from rubbing against the skull). Whether they did or not, I have no clue because we care-takers never laid eyes on the doctors in the sixteen hours my man was in the hospital after the surgery. And of course, I went bananas, so I probably would have forgotten to ask anyway.
The final step (besides putting my husband back together) was taking a piece of pericardium (basically the sac that holds your heart) that was donated by some wonderful person after they died, to help hold his brain in place. If it were not for this unidentified organ donor, none of this would be possible. I believe they used to use a Kevlar like mesh for this, but the cutting edge technology guys and gals figured out that the pericardium makes for a better long-term outcome.
Naturally, they closed him all up and stapled his skin together. They put surgical tape (that's still stuck on-- sticky sh*t!!!) over the incision site--which isn't that big, by the way-- it was supposed to eight to ten inches, but ended up about four to six inches long. Of course, the incision in the muscle and other parts may be much longer than the superficial one.
It's cutting edge stuff, but its heavy and deep. The recovery is hell. I now know why the doctors would only say that my husband would have the worst headache of his life and feel "crumby for awhile". You'll "probably get a strain of meningitis (not the spinal one that kills everyone) which will make you feel worse and intensify the headache". Good lord, I hope we paid for someone's summer home in France.
No definitive descriptions of anything when I asked questions about recovery-- very vague and no concrete answers. They say: "Everyone is different. Every responds differently. There are lots of complications and we aren't perfect. We screw up sometimes" (of course the law makes them say that--informed consent). That was the only clear picture we got-- that no one knows for sure how your body will react to all this mess and doctors aren't gods, but that this surgery is the only way you won't be dead by Christmas.
If they told you what really happens-- what you really go through during the recovery process-- nobody would ever willingly go through this sorta surgery. My poor husband wishes he didn't do this, wishes that the pain would just let up and thinks that death might have been an okay option in hindsight. The headache could last up to six weeks-- I couldn't effing imagine a six week long "migraine times a thousand" (how my hubby describes it). Nope, I'll just enjoy the last days of my life, thanks, buh-bye now.
The sad thing is that he was prescribed 5/325 of Oxycodone and told to take 1 to 2 every four hours. Well, a Tylenol gives him more relief than the narcotic. I'm sure there is a good reason for the pain meds prescribed after this surgery, but I'd like to know it. Maybe its more for the muscle pain? His pills certainly wouldn't help me with a headache, so what purpose do they serve besides the 325mg of Tylenol its has in it.
And because this surgery was such a big deal, full of such huge unknowns, its probably a large part of my meltdown. Okay, let him out of the hospital about 16 hours after surgery (practically an outpatient procedure span of time) so I can take him home and kill him. You need to at least be a nurse to care for him-- and thank god I helped a girl get through nursing school, read as much as I could about the procedures and the aftercare or he would have been dead by now.
Sidebar:
We've already been to the ER once. He probably does have a strain of meningitis-- starting the day before the ER trip-- and some dehydration because he wasn't eating at all nor drinking much. I pretty much thought he was going to die in our bed. (It's part of why I can't sleep-- too busy checking vitals. The other half is imagining what they've done to him *shudder*.)
At the ER, we had to explain his condition and the corrective surgery he underwent. I brought the discharge papers for reference, but even still we had to explain to doctors and nurses what it all meant-- the surgeon's PA eventually called, explained it to the ER doctor and then told him what check and to do. It's a little scary when the ER doesn't know what to do with you and to see them look at you quizzically.
"You had what done for what?!?!" Look mom, no hands!!! Or skull!!
Sheesh.
That's it-- everything in a nutshell, tied up with a bow. I'm gonna stop now because I would like to stop thinking about this and get some sleep. Or not. I'm going to try to not to envision how much he's suffering, how little I can do and the magnitude of what he's had done to his head. It's like hitting your computer with a sledgehammer and putting it back together again to make it work better.
A size 12 brain in a size 10 skull...
While I have time, let me tell what they did my husband. I have a hard time thinking about it because its gives me the heebie-jeebies (did spell that correctly?). It's also absolutely amazing. Who thinks up this stuff? I thank god that they do, but it still blows my mind (and it's blowing my husband's mind literally!).
This is the sum of all parts, to the best of my knowledge. None of this has been easy to understand. The medical dictionary has been my friend the past two months. I've done so much reading, questioning and explaining that I could probably start work as a doctor tomorrow-- except I don't like people meat. Blood is fine, not an issue for me at all, but get below the skin and I can't tolerate it (I make my husband tell me "when it's over" when we watch anything that has any sorta "gore"... I shut my eyes and cover my face.):
First, they had to dissect the muscles at the base of the skull to the C1 vertebrate. Apparently that in itself takes a lot of work as that area of the body contains a lot of muscle. I jokingly asked the surgeon if I could still whap the husband upside the head (or in that area), to which the surgeon replied a hearty yes- I could hit him there as much as I liked because the muscles give adequate cushioning.
The doctors then shave the bone at the base of the skull until its the thickness of an egg shell. They carefully take out that thinned back portion of the skull. My husbands says it feels like they took four inches off his skull, but my guess is its less than that-- it just feels that way to him. That part of the operation I think is called a suboccipital decompressive craniectomy. Now that's a name to chew on.
Either before or after the above, a temporary shunt was put in my husband to drain away all of his spinal fluid and maybe cerebral fluid (I'm not sure). This allows room for everything messed with, including the brain, to go through the inflammation that occurs during the healing process. Without this part, his head would implode after surgery and his brain would be literally crushed or the brain stem... not something to mess with, but it's part of why he's had the world's worst headache for the past two weeks.
The surgeons then doa C1 laminectomy, where they basically do that bone shaving thing to the outer bone of the C1 vertebrate. This just allows more room for my husband's big brain. And probably helps its juices all go in the right places. I don't know for sure.
Next came the duraplasty. I think that's where they opened up the covering of the brain. The rockstar doctor said he'd peak at the brain at this time to remove any adhesions (any area of brain matter that was damaged from rubbing against the skull). Whether they did or not, I have no clue because we care-takers never laid eyes on the doctors in the sixteen hours my man was in the hospital after the surgery. And of course, I went bananas, so I probably would have forgotten to ask anyway.
The final step (besides putting my husband back together) was taking a piece of pericardium (basically the sac that holds your heart) that was donated by some wonderful person after they died, to help hold his brain in place. If it were not for this unidentified organ donor, none of this would be possible. I believe they used to use a Kevlar like mesh for this, but the cutting edge technology guys and gals figured out that the pericardium makes for a better long-term outcome.
Naturally, they closed him all up and stapled his skin together. They put surgical tape (that's still stuck on-- sticky sh*t!!!) over the incision site--which isn't that big, by the way-- it was supposed to eight to ten inches, but ended up about four to six inches long. Of course, the incision in the muscle and other parts may be much longer than the superficial one.
It's cutting edge stuff, but its heavy and deep. The recovery is hell. I now know why the doctors would only say that my husband would have the worst headache of his life and feel "crumby for awhile". You'll "probably get a strain of meningitis (not the spinal one that kills everyone) which will make you feel worse and intensify the headache". Good lord, I hope we paid for someone's summer home in France.
No definitive descriptions of anything when I asked questions about recovery-- very vague and no concrete answers. They say: "Everyone is different. Every responds differently. There are lots of complications and we aren't perfect. We screw up sometimes" (of course the law makes them say that--informed consent). That was the only clear picture we got-- that no one knows for sure how your body will react to all this mess and doctors aren't gods, but that this surgery is the only way you won't be dead by Christmas.
If they told you what really happens-- what you really go through during the recovery process-- nobody would ever willingly go through this sorta surgery. My poor husband wishes he didn't do this, wishes that the pain would just let up and thinks that death might have been an okay option in hindsight. The headache could last up to six weeks-- I couldn't effing imagine a six week long "migraine times a thousand" (how my hubby describes it). Nope, I'll just enjoy the last days of my life, thanks, buh-bye now.
The sad thing is that he was prescribed 5/325 of Oxycodone and told to take 1 to 2 every four hours. Well, a Tylenol gives him more relief than the narcotic. I'm sure there is a good reason for the pain meds prescribed after this surgery, but I'd like to know it. Maybe its more for the muscle pain? His pills certainly wouldn't help me with a headache, so what purpose do they serve besides the 325mg of Tylenol its has in it.
And because this surgery was such a big deal, full of such huge unknowns, its probably a large part of my meltdown. Okay, let him out of the hospital about 16 hours after surgery (practically an outpatient procedure span of time) so I can take him home and kill him. You need to at least be a nurse to care for him-- and thank god I helped a girl get through nursing school, read as much as I could about the procedures and the aftercare or he would have been dead by now.
Sidebar:
We've already been to the ER once. He probably does have a strain of meningitis-- starting the day before the ER trip-- and some dehydration because he wasn't eating at all nor drinking much. I pretty much thought he was going to die in our bed. (It's part of why I can't sleep-- too busy checking vitals. The other half is imagining what they've done to him *shudder*.)
At the ER, we had to explain his condition and the corrective surgery he underwent. I brought the discharge papers for reference, but even still we had to explain to doctors and nurses what it all meant-- the surgeon's PA eventually called, explained it to the ER doctor and then told him what check and to do. It's a little scary when the ER doesn't know what to do with you and to see them look at you quizzically.
"You had what done for what?!?!" Look mom, no hands!!! Or skull!!
Sheesh.
That's it-- everything in a nutshell, tied up with a bow. I'm gonna stop now because I would like to stop thinking about this and get some sleep. Or not. I'm going to try to not to envision how much he's suffering, how little I can do and the magnitude of what he's had done to his head. It's like hitting your computer with a sledgehammer and putting it back together again to make it work better.
A size 12 brain in a size 10 skull...
Friday, May 20, 2011
Fixing a Chiari Malformation Part One: Processing.
Yesterday was a long, harrowing day. Husband's father says its always good to be a surgeon's first patient of the day. If you know my husband and his dad, being prompt isn't an aspiration, its a sin. Being early is always best, which yesterday we were. On the other hand, my sister says being late is better, regardless of your surgery order. I understand both of their reasoning this morning.
We were early and second in line for surgery (that's the royal we or is that the author's we? or maybe just "wee" because I am still tired and haven't had enough coffee). Husband's check in time at the hospital was supposed to be 6:30am Thursday morning, but for my husband it was 6:09am. It would have been 5:58, but there was a line at the surgery check in desk.
I don't know what time we were taken back to "processing", which is basically where they make you wait to get to the pre-operative area, get fully admitted by your pre-op nurse and get naked, dressed in one of those horrible (yet fashionable?) hospital gowns while listen to the hustle and bustle of nurses, techs patients and alarms. I can't tell you what time it was then, but I can tell you that the nurses were looking forward to lunch.
If you want to calm a nervous patient, this is not the place nor the time to do it. The communication is nill, you get checked on by someone who has no information about how long you will be waiting before something very scary happens and the standard answer is "I'm not sure". I don't think in the six hours my inlaws, husband and me waited in the pre-op area that any confidence in the unfamiliar hospital and its staff was gained. Lost, maybe, but definitely not earned.
The coffee stand did have excellent coffee, but they should have given away a free Xanax for every surgical patient family member. Or maybe a shot of something to take the edge off. Even better, they should have given my husband something to relax him and something for the pain he endured going without medication since 10pm the previous night. The nurse did finally ask if his pain level warranted a medication, but not until 30 minutes before he left for surgery.
You know what's great? I was reminded as different as my husband is from his dad, they still have many similarities. One of those is an inability to cope when situations and circumstances are out 100% out of their control. It was just a little scary when we got to hour four. Not to mention, my silly sense of humor isn't understood by my father-in-law all the time. He must think I'm nuts at this point. My using re-framing to deal with my husband's wait time wasn't understood much either, so I finally explained very nicely that having a big, clear picture shown to you in a different light is helpful and calming. And then I had a cigarette or two because I needed a break. I love my fathers, but sometimes they need a woman's perspective in a blunt way. That was not the time. And my father in law still thinks I am nice. I think...
But finally he did leave for surgery. An orderly who educated us on how and when to steal stuff from the hospital (even though I didn't see anything worth stealing) zipped us up to the Preparation Area, or rather the husband got to go there and I was given the world's fastest instructions to the waiting area. Naturally, after all this wait, my inlaws had gone off to eat lunch meaning they missed this part.
I checked into the much nicer surgical lounge (why they call it a "lounge" I have no idea because no one looked to be lounging) then ran off to find my inlaws. I was entirely too nervous to hit the right buttons on my cell phone. Actually, I was so nervous that it took me a good 5 minutes to find an elevator to the cafeteria. And naturally that meant I couldn't direct my husband's parents to where they needed to go.
Epic Daughter-in-law Fail. I went to the car for a smoke (sorry, this has been sooo stressful!) and called everyone that I had intended to call post surgery at the time they expected to hear outcome to say "yay, he just went into to the prep area". My kid said "okay Ma, call me in 4 hours". Typical Asperger's-- memorized the length of the surgery and wanted no more info. Now if everyone were like that...
Part Two will follow later. I have 30 more minutes of solitude and coffee before we go visiting (so, you know, happy ending and all).
We were early and second in line for surgery (that's the royal we or is that the author's we? or maybe just "wee" because I am still tired and haven't had enough coffee). Husband's check in time at the hospital was supposed to be 6:30am Thursday morning, but for my husband it was 6:09am. It would have been 5:58, but there was a line at the surgery check in desk.
I don't know what time we were taken back to "processing", which is basically where they make you wait to get to the pre-operative area, get fully admitted by your pre-op nurse and get naked, dressed in one of those horrible (yet fashionable?) hospital gowns while listen to the hustle and bustle of nurses, techs patients and alarms. I can't tell you what time it was then, but I can tell you that the nurses were looking forward to lunch.
If you want to calm a nervous patient, this is not the place nor the time to do it. The communication is nill, you get checked on by someone who has no information about how long you will be waiting before something very scary happens and the standard answer is "I'm not sure". I don't think in the six hours my inlaws, husband and me waited in the pre-op area that any confidence in the unfamiliar hospital and its staff was gained. Lost, maybe, but definitely not earned.
The coffee stand did have excellent coffee, but they should have given away a free Xanax for every surgical patient family member. Or maybe a shot of something to take the edge off. Even better, they should have given my husband something to relax him and something for the pain he endured going without medication since 10pm the previous night. The nurse did finally ask if his pain level warranted a medication, but not until 30 minutes before he left for surgery.
You know what's great? I was reminded as different as my husband is from his dad, they still have many similarities. One of those is an inability to cope when situations and circumstances are out 100% out of their control. It was just a little scary when we got to hour four. Not to mention, my silly sense of humor isn't understood by my father-in-law all the time. He must think I'm nuts at this point. My using re-framing to deal with my husband's wait time wasn't understood much either, so I finally explained very nicely that having a big, clear picture shown to you in a different light is helpful and calming. And then I had a cigarette or two because I needed a break. I love my fathers, but sometimes they need a woman's perspective in a blunt way. That was not the time. And my father in law still thinks I am nice. I think...
But finally he did leave for surgery. An orderly who educated us on how and when to steal stuff from the hospital (even though I didn't see anything worth stealing) zipped us up to the Preparation Area, or rather the husband got to go there and I was given the world's fastest instructions to the waiting area. Naturally, after all this wait, my inlaws had gone off to eat lunch meaning they missed this part.
I checked into the much nicer surgical lounge (why they call it a "lounge" I have no idea because no one looked to be lounging) then ran off to find my inlaws. I was entirely too nervous to hit the right buttons on my cell phone. Actually, I was so nervous that it took me a good 5 minutes to find an elevator to the cafeteria. And naturally that meant I couldn't direct my husband's parents to where they needed to go.
Epic Daughter-in-law Fail. I went to the car for a smoke (sorry, this has been sooo stressful!) and called everyone that I had intended to call post surgery at the time they expected to hear outcome to say "yay, he just went into to the prep area". My kid said "okay Ma, call me in 4 hours". Typical Asperger's-- memorized the length of the surgery and wanted no more info. Now if everyone were like that...
Part Two will follow later. I have 30 more minutes of solitude and coffee before we go visiting (so, you know, happy ending and all).
Thursday, May 5, 2011
Kid Manual: A little mom snark
Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger's Syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.
Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.
I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.
I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".
The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?
Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.
My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.
I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.
I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).
The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.
Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:
Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.
I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.
I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".
The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?
Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.
My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.
I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.
I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).
The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.
Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:
- Uh-huh, I understand what you are saying. Thank you for the input.
- I have tried that, thank you, but it did not work for us.
- It's a sensory issue, so it requires a different approach. I appreciate your concern.
- That is a typical behavior for Aspie kids, but we are okay with it.
- Relax about it.
- He'll live.
- I'll live.
- You'll live.
- That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
- In the big picture, we are okay with that. I'm sorry you aren't.
- That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
- If he doesn't like it, it's okay. I don't like seafood/country music/fleece/spiders/cotton balls. It's okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
- Please re-read what Asperger's Syndrome means for my boy. You obviously missed something important, which is okay because this isn't easy for anyone.
- It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It's not you, its him and it will not cause sudden cardiac arrest.
- My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a LIE!), plus I've spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
- My child is not just like your child. If he were, he'd be a clone. So far as I know people have not been cloned yet. I'd be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
- Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
- You can't convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
Tuesday, April 19, 2011
A long time...Dog Stool
Since I've posted anything. I am really good at not finishing stuff. Or getting distracted. Or something.
The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.
Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).
My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.
Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.
In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.
Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.
The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).
I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.
In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)
On that note, I'm out.
(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)
The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.
Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).
My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.
Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.
In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.
Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.
The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).
I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.
In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)
On that note, I'm out.
(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)
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