Bier Werking
16 years ago
Sunday, November 30, 2008
And they're off ...
To Cleveland we go. We have our house sitter and child watcher in place. Renee's mom has traveled from NJ to watch o'er things here in Louisville. She'd probably prefer to be with her little girl in Cleveland but we're all making sacrifices. Now we're set to go driving in the rain. Our arrival hopefully timed to miss the football traffic. The hotel's right across the street from the stadium and the Brown's are in town.
Thursday, November 27, 2008
Thanksgiving Break
On this day of National repast, Renee, Cassidy and I offer our thanks to you our friends and family for the great blessings bestowed upon us. We have received grand offers of help, soft pats of reassurance, opening of homes and unrivaled support.
As we embark on this tumultuous sojourn we have the rock of your caring to lean against along the way. May you share in our blessings and suffer no hardships.
Enough of that touchy-feely stuff, it's a holiday take a break from these heavy topics; breakfast, break bread, break dance, break tradition and break wind. Just don't break a leg. We've got enough medical issues to worry about.
Now what the heck are you doing on the computer? Go eat! (Oh sorry Renee, everyone but you.)
Happy Thanksgiving!
As we embark on this tumultuous sojourn we have the rock of your caring to lean against along the way. May you share in our blessings and suffer no hardships.
Enough of that touchy-feely stuff, it's a holiday take a break from these heavy topics; breakfast, break bread, break dance, break tradition and break wind. Just don't break a leg. We've got enough medical issues to worry about.
Now what the heck are you doing on the computer? Go eat! (Oh sorry Renee, everyone but you.)
Happy Thanksgiving!
Wednesday, November 26, 2008
The Wife (patient)
To try and be delicate, Renee, for two years now, has had a roaring conflagration blazing in her gut and at the seat of her pants. Her doctor calls what she’s got Chronic Ulcerative Colitis. This is a disease that is manageable to some. It is one that has become unmanageable to her.
Upcoming in a few short days is total proctocolectomy with ileoanal reservoir reconstruction surgery – in English, full removal of the large intestine. For Renee, it will be the third organ removal and her fourth major operation. The medical sites all call it routine surgery. It may well be for some doctors and hospitals but surgery is never routine to the patient.
Renee’s doctor calls her one tough broad. He’s a hoot. He calls her on Sundays to check on her; she knows his voice without him telling her who’s calling. He’s been through the operation himself. He’s also had complications that caused his J-pouch to fail. For those of you who have no idea. The J-pouch is an internal colostomy bag built from your small intestine. It is built at the time of the colon (large intestine) removal. An external colostomy bag is attached and left in place until the interior pouch heals, approximately three months. The surgeons then go back in, disconnect the exterior bag, and connect the J-pouch so that you may go to the bathroom normally. It allows you to lead a pretty normal life and have almost normal bowel movements, although we are told more frequently. So, essentially there's nothing normal about it.
Here’s some info:
http://www.ccfa.org/info/surgery/surgeryuc
Thousands of people are walking around with either the interior or exterior pouch and you’ll never know it unless they tell you. So in one sense this is routine.
But our girl here has a history of surgical complications so she’s a little more nervous than the average patient. At the same time, she is done with this disease. It has wiped her out physically and mentally. Since she was hospitalized last December I can count on one hand the number of good days she has had. Yes, I remember them.
She has hung on longer than many could have. For most patients these flare ups usually don’t last, a few days, a couple of weeks and they’re back to normal. But Renee can’t be like other patients. Two years without a normal bowel movement, a full year without a full meal, this has been her life. Constant diarrhea, vomiting, and excruciating pain, have become her daily routine. Knowing where every bathroom is in Louisville is must knowledge.
It's not like she's been ignoring the problem hoping it would go away on it's own, she has tried every possible pharmaceutical treatment. Our kitchen counter looks like a pharmacist’s workstation. The last straw was the failure of infusions (intravenous applications similar to chemotherapy) of some drug called Remicade, an immunity suppressant made from mouse proteins.
Sounds wonderful, doesn’t it? You’re sick and they’re giving you a drug to turn off your immune system. Somehow it works, at least most of the time. We were told that this drug is over 90% successful. Guess who’s in the ten percent.
Renee’s few good days were following these treatments. We thought there was hope for non-surgical progress but after the third infusion the symptoms re-ignited to a point where I thought she was going to do surgery on herself.
Before the Remicade treatments we traveled to the Cleveland Clinic and met with the head of the Colorectal Disease Unit and a surgeon. At that time they concurred with Louisville gastroenterologists that Remicade was the next logical step. The Cleveland Clinic is rated as one of the top hospitals in the world for dealing with ulcerative colitis. Renee’s doctor had his surgery there. It’s 300 miles away but if you’re looking for a second opinion and you can get in to see one the best doctors on the planet for your particular illness you go. We went and now we’re going back.
We have nothing against Louisville doctors. They have twice saved Renee’s life. First by detecting a cancerous kidney cyst and safely removing it - she has now been cancer free for five years - and second was the operation to remove adhesions that were strangling her intestines following the kidney removal surgery. The complication I mentioned earlier. Adhesions are internal scar tissue. Renee’s scarring grew so thick that it choked her intestines and was preventing her internal organs from disposing of toxins. Emergency surgery was performed to release the obstruction.
So you see we have a huge amount of respect for the medical practitioners here. They properly diagnosed Cassidy and are dealing with Renee’s numerous issues. This surgery is performed in Louisville but we now have access to a hospital that specializes in this disease. They treat a higher number of patients and they deal with a higher number of surgical complications. It’s like baseball, we are just playing the percentages.
Upcoming in a few short days is total proctocolectomy with ileoanal reservoir reconstruction surgery – in English, full removal of the large intestine. For Renee, it will be the third organ removal and her fourth major operation. The medical sites all call it routine surgery. It may well be for some doctors and hospitals but surgery is never routine to the patient.
Renee’s doctor calls her one tough broad. He’s a hoot. He calls her on Sundays to check on her; she knows his voice without him telling her who’s calling. He’s been through the operation himself. He’s also had complications that caused his J-pouch to fail. For those of you who have no idea. The J-pouch is an internal colostomy bag built from your small intestine. It is built at the time of the colon (large intestine) removal. An external colostomy bag is attached and left in place until the interior pouch heals, approximately three months. The surgeons then go back in, disconnect the exterior bag, and connect the J-pouch so that you may go to the bathroom normally. It allows you to lead a pretty normal life and have almost normal bowel movements, although we are told more frequently. So, essentially there's nothing normal about it.
Here’s some info:
http://www.ccfa.org/info/surgery/surgeryuc
Thousands of people are walking around with either the interior or exterior pouch and you’ll never know it unless they tell you. So in one sense this is routine.
But our girl here has a history of surgical complications so she’s a little more nervous than the average patient. At the same time, she is done with this disease. It has wiped her out physically and mentally. Since she was hospitalized last December I can count on one hand the number of good days she has had. Yes, I remember them.
She has hung on longer than many could have. For most patients these flare ups usually don’t last, a few days, a couple of weeks and they’re back to normal. But Renee can’t be like other patients. Two years without a normal bowel movement, a full year without a full meal, this has been her life. Constant diarrhea, vomiting, and excruciating pain, have become her daily routine. Knowing where every bathroom is in Louisville is must knowledge.
It's not like she's been ignoring the problem hoping it would go away on it's own, she has tried every possible pharmaceutical treatment. Our kitchen counter looks like a pharmacist’s workstation. The last straw was the failure of infusions (intravenous applications similar to chemotherapy) of some drug called Remicade, an immunity suppressant made from mouse proteins.
Sounds wonderful, doesn’t it? You’re sick and they’re giving you a drug to turn off your immune system. Somehow it works, at least most of the time. We were told that this drug is over 90% successful. Guess who’s in the ten percent.
Renee’s few good days were following these treatments. We thought there was hope for non-surgical progress but after the third infusion the symptoms re-ignited to a point where I thought she was going to do surgery on herself.
Before the Remicade treatments we traveled to the Cleveland Clinic and met with the head of the Colorectal Disease Unit and a surgeon. At that time they concurred with Louisville gastroenterologists that Remicade was the next logical step. The Cleveland Clinic is rated as one of the top hospitals in the world for dealing with ulcerative colitis. Renee’s doctor had his surgery there. It’s 300 miles away but if you’re looking for a second opinion and you can get in to see one the best doctors on the planet for your particular illness you go. We went and now we’re going back.
We have nothing against Louisville doctors. They have twice saved Renee’s life. First by detecting a cancerous kidney cyst and safely removing it - she has now been cancer free for five years - and second was the operation to remove adhesions that were strangling her intestines following the kidney removal surgery. The complication I mentioned earlier. Adhesions are internal scar tissue. Renee’s scarring grew so thick that it choked her intestines and was preventing her internal organs from disposing of toxins. Emergency surgery was performed to release the obstruction.
So you see we have a huge amount of respect for the medical practitioners here. They properly diagnosed Cassidy and are dealing with Renee’s numerous issues. This surgery is performed in Louisville but we now have access to a hospital that specializes in this disease. They treat a higher number of patients and they deal with a higher number of surgical complications. It’s like baseball, we are just playing the percentages.
The Dog
The dog's medical problems are a little easier to deal with, I guess. At five years old she started leaking. It seems someone poked a hole in the girl. They call it spaying. Now the vet tells us that spaying at the recommended age of six months leads to adult leakage. The mutt started occasionally dripping around the house. This apparently led to a urinary tract infection. About a month of antibiotic treatments and now a pill to control incontinence and all is almost well.
The biggest problem, aside from the damp mess and smell, is this ordeal sparked very frequent outside visits for the pup. Now we can’t break the dog of the habit. Every ten minutes the dog wants to go outside. Some dogs scratch, some bark, our dog knocks her nose on the doorknob. I wish I could teach her to turn it. She rattles the knob incessantly and now has taken to whining when you don’t jump right up and acquiesce to her wishes.
She’s also taken a dislike toward her food. This is due to being over-treated by the other two girls during her sickness. "Oh, the poor doggie doesn’t feel good? Here’s a cookie." Now all she wants is doggie donuts and the like. She stands next to the cabinet where the treats are kept and hangs her head low like a vulture waiting on a car to crush a critter. I’ve tried very hard for five years not to spoil the dog and in a few short months all that training went down the crapper.
Speaking of the crapper, the next post will be about our patient, Renee.
The biggest problem, aside from the damp mess and smell, is this ordeal sparked very frequent outside visits for the pup. Now we can’t break the dog of the habit. Every ten minutes the dog wants to go outside. Some dogs scratch, some bark, our dog knocks her nose on the doorknob. I wish I could teach her to turn it. She rattles the knob incessantly and now has taken to whining when you don’t jump right up and acquiesce to her wishes.
She’s also taken a dislike toward her food. This is due to being over-treated by the other two girls during her sickness. "Oh, the poor doggie doesn’t feel good? Here’s a cookie." Now all she wants is doggie donuts and the like. She stands next to the cabinet where the treats are kept and hangs her head low like a vulture waiting on a car to crush a critter. I’ve tried very hard for five years not to spoil the dog and in a few short months all that training went down the crapper.
Speaking of the crapper, the next post will be about our patient, Renee.
The Child
It seems we finally have things under control with our oh-so-not-so-little girl. Her condition, which relates back to her cardiac troubles at birth, has been diagnosed as Noonan Syndrome. It’s genetic and there are so many characteristics of this condition on both sides of the families that it is a wonder that it took twelve years to find a doctor to identify it, even though her symptoms are not severe. You can follow the link below and read up on it if you like.
http://www.noonansyndrome.org/home.htm
A word here to parents, never, I MEAN NEVER, let a lay person try to diagnose your child’s affliction. We had teachers, clergy, school counselors and numerous other non-medically trained individuals put their two cents in. Attention Deficit Disorder, Attention Deficit Hyperactive Disorder, your child needs Ritalin, your child’s just dumb. Yes, at least one supposed educator was that cold. Deflect their assertions. If your child has issues have them checked out by a pediatrician and have them recommend a specialist, for Cassidy that was an endocrinologist.
Our child was accused of being impossible to deal with and at the same time described as the most pleasant, marvelous and hard-working student in the classroom. Her grades did not correspond with all the hard work. Everyday was a struggle, breakdowns and battles, both at school and at home. Simultaneous to this she had flat-lined on the growth chart. It took us a long time to put the contradictions together. Her stubbornness was a red flag she threw up to let us know there was something else lurking beneath the surface. It wasn’t just red-head syndrome. Thank goodness we did not just cave in and start stuffing Ritalin down her throat.
The Noonan Syndrome diagnosis has allowed us to develop both a medical and scholastic plan of success. I am not a fan of medication, especially for children, but it is amazing when you find the right course of action. For Cassidy, it is twofold - 1. Pharmaceutically, it is not very intense – treating thyroid issues and injecting growth hormones - no mind altering drugs; and, 2. Academically, we’ve changed schools to one that specifically deals with children who learn differently.
I've downplayed the details of the medical and institutional testing we put Cassidy through to reach this point but she took it like a trooper. She has also adjusted well to her new school. It’s nice to have our daughter back. At least that part of the puzzle has settled down lately.
Throughout this chronicle I’ll be inserting lyrics and snippets of my own to help describe my feelings on certain issues and to lighten things up a bit. Here’s a song I wrote about the controversial nature of drugging our children.
Oh Renee, be patient! We'll get to you eventually.
Medicate the Child
By Bob Masterson © Old Paint Music 2006
Your son’s a little different
Your daughter’s cracking wise
We don’t like non-conformity
Let’s medicate the child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
The classroom’s overcrowded
It cramps the teacher’s style
This pill will keep them in their seats
So let’s medicate the child
Your grades are less than average
We’ll have you classified
And pull you from the school reports
When we medicate the child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
There’s Ritalin for Mozart
For Picasso a special vile
Einstein’s brain is too untamed
Let’s medicate that child
Edison’s precocious
Jessie Owen’s running wild
That Freud kid just gave us the slip
Let’s medicate that child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
We don’t know the long term effects
Or possible adult defects
Are we building a more complex complex?
But let’s medicate the child
The pharmacy’s the answer
Hey, it’s only for a while
Tell the kids “Just say no to drugs!”
Then medicate the child
Medicate the child
Medicate the child
Tell the kids “Just say no to drugs!”
Then medicate the child
http://www.noonansyndrome.org/home.htm
A word here to parents, never, I MEAN NEVER, let a lay person try to diagnose your child’s affliction. We had teachers, clergy, school counselors and numerous other non-medically trained individuals put their two cents in. Attention Deficit Disorder, Attention Deficit Hyperactive Disorder, your child needs Ritalin, your child’s just dumb. Yes, at least one supposed educator was that cold. Deflect their assertions. If your child has issues have them checked out by a pediatrician and have them recommend a specialist, for Cassidy that was an endocrinologist.
Our child was accused of being impossible to deal with and at the same time described as the most pleasant, marvelous and hard-working student in the classroom. Her grades did not correspond with all the hard work. Everyday was a struggle, breakdowns and battles, both at school and at home. Simultaneous to this she had flat-lined on the growth chart. It took us a long time to put the contradictions together. Her stubbornness was a red flag she threw up to let us know there was something else lurking beneath the surface. It wasn’t just red-head syndrome. Thank goodness we did not just cave in and start stuffing Ritalin down her throat.
The Noonan Syndrome diagnosis has allowed us to develop both a medical and scholastic plan of success. I am not a fan of medication, especially for children, but it is amazing when you find the right course of action. For Cassidy, it is twofold - 1. Pharmaceutically, it is not very intense – treating thyroid issues and injecting growth hormones - no mind altering drugs; and, 2. Academically, we’ve changed schools to one that specifically deals with children who learn differently.
I've downplayed the details of the medical and institutional testing we put Cassidy through to reach this point but she took it like a trooper. She has also adjusted well to her new school. It’s nice to have our daughter back. At least that part of the puzzle has settled down lately.
Throughout this chronicle I’ll be inserting lyrics and snippets of my own to help describe my feelings on certain issues and to lighten things up a bit. Here’s a song I wrote about the controversial nature of drugging our children.
Oh Renee, be patient! We'll get to you eventually.
Medicate the Child
By Bob Masterson © Old Paint Music 2006
Your son’s a little different
Your daughter’s cracking wise
We don’t like non-conformity
Let’s medicate the child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
The classroom’s overcrowded
It cramps the teacher’s style
This pill will keep them in their seats
So let’s medicate the child
Your grades are less than average
We’ll have you classified
And pull you from the school reports
When we medicate the child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
There’s Ritalin for Mozart
For Picasso a special vile
Einstein’s brain is too untamed
Let’s medicate that child
Edison’s precocious
Jessie Owen’s running wild
That Freud kid just gave us the slip
Let’s medicate that child
Medicate the child
Medicate the child
We might crush their spirit
Or kill their will but
Let’s medicate the child
We don’t know the long term effects
Or possible adult defects
Are we building a more complex complex?
But let’s medicate the child
The pharmacy’s the answer
Hey, it’s only for a while
Tell the kids “Just say no to drugs!”
Then medicate the child
Medicate the child
Medicate the child
Tell the kids “Just say no to drugs!”
Then medicate the child
Background - too much info
There is never a dull moment in our house. Oh, how I wish for dull moments. We have become so used to jumping from one medical crisis to another that I’m not sure we would know how to deal with doldrums. I have been blessed to have two (three if you count the dog) great women with which I cohabit, but these girls constantly keep me on the shuttle to doctors and hospitals. If I had any sense I’d buy an ambulance service.
The next few posts will give you an idea about our family health. Ours is probably not too different from yours. We've all got these medical issues to deal with. They've just seem to piling up on us this year. Yes Renee, this blog is still about you but I'm spreading the wealth a bit. Hey, I'm just communicating. Isn't that what everyone wants? Some will think it is way too much information. Oh well, it will give you something to do while waiting for the next update.
The next few posts will give you an idea about our family health. Ours is probably not too different from yours. We've all got these medical issues to deal with. They've just seem to piling up on us this year. Yes Renee, this blog is still about you but I'm spreading the wealth a bit. Hey, I'm just communicating. Isn't that what everyone wants? Some will think it is way too much information. Oh well, it will give you something to do while waiting for the next update.
Sunday, November 23, 2008
Surgery update disclaimer
Renee is going for surgery. You want to know if she's OK. I want to let you know how she's doing. You want me to use the telephone to let you know. I may, but I must tell you, it is highly unlikely that I’m going to call you with regular updates, even though I have been ordered by Renee to do so. If you know me then you know I don’t do phone well. Sorry, it’s a problem and I know it and I’ve admitted it but it’s not something I’m going to recover from. Hi, I’m Bob, and I’m a phone-a-phobic. Doesn’t matter, I use it when I have to but that is it.
Yes, you may call me. I’ll talk to you in clipped sentences and you will hear short reassuring quips then nothing. Caller, "Are you there?" Bob, "Yes I am. Are we done?" You will not get details over the phone. Won’t happen, sorry.
Come here for details, make comments, email me, sign up as a follower. It will be a lot less painful and much more informative for everyone. In fact, you'll get more info than you bargained for.
And, THANK YOU ALL for your prayers and well wishes.
Yes, you may call me. I’ll talk to you in clipped sentences and you will hear short reassuring quips then nothing. Caller, "Are you there?" Bob, "Yes I am. Are we done?" You will not get details over the phone. Won’t happen, sorry.
Come here for details, make comments, email me, sign up as a follower. It will be a lot less painful and much more informative for everyone. In fact, you'll get more info than you bargained for.
And, THANK YOU ALL for your prayers and well wishes.
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