It's been a quiet holiday week. Christmas Eve was spent with family, a lovely church service that included Boo and Squeaker, and some assistance by Santa's finest helpers (Hubby, me, Citygirl and my oldest nephew, known to the gaming world as Parrow). I was in bed on Christmas Eve by 10:30, a personal record early retiring time.
Christmas morning I was the only one up from about 6:30 to nearly ten when I finally sent out some text messages to see where all my sleepyheads were! Babygirl is the only "child" in the house, and even she was in no hurry to check out the bounty under the tree! By the time Jujubee, Curlygirl, and Bella (one of our foster kids, now grown and with a little man of her own) came, present-opening was in full swing.
Sadly, I was nursing a violent cold, and spent a good bit of Christmas day dozing on the couch, and bless everybody else for making that possible. Dinner was lovely (great, great thanks to my sis-in-law for making that AMAZING cake!), the day peacefully chaotic.
But my best present by far has been the hopeful direction taken by Babygirl's headaches. She's not waking up in pain every day. She's not laying around doing nothing for hours on end hoping for a break in the pain. She's not needing pain meds for times a day, and nausea meds around the clock.
She's feeling better. There have even been a couple of days with no pain at all.
Hope is a very, very good feeling. Looking forward with my head up instead of feeling like I need to duck-and-cover feels very good indeed.
Happy New Year's Eve to all of you! Be safe, be blessed, be at peace.
DeeDee
Monday, December 31, 2012
Wednesday, December 26, 2012
Thank God for Elves.....
When I arrived home from work on Christmas Eve I found an envelope on my dining room table.
"Merry Christmas.
-Santa Claus"
I asked Babygirl where it had come from: "Some dude came to the door. He said he reads your blog."
Hmmm. Who knew Santa had time for blog-reading so close to Christmas?
The envelope contained $250.
Thank you, Santa-dude!
DeeDee
"Merry Christmas.
-Santa Claus"
I asked Babygirl where it had come from: "Some dude came to the door. He said he reads your blog."
Hmmm. Who knew Santa had time for blog-reading so close to Christmas?
The envelope contained $250.
Thank you, Santa-dude!
DeeDee
Monday, December 24, 2012
Travel.....
If, God willing, we do not need to make an emergency year-end run to Philadelphia, we have our travel mileage total: 14,701 miles specifically limited to medical travel alone. Almost fifteen THOUSAND miles. That's a whole lot of highway and byway by the way.
I did some math. We could have driven to my Aunt's in Sacremento, and back. Almost three times. We could have driven to my sister-in-law in Tampa Florida - SIX times. We could have mixed it up: One trip to Sacremento, two to Tampa, and two to Disney's Magic Kingdom. Or hey - we have friends in Austin! We could go there. California. Tampa. AND Magic Kingdom, and have some miles leftover.
You get the idea. We did a LOT of driving. I haven't calculated the tolls paid, but at roughly $24/Philly trip, with (I think) 34 trips, that's $816. The medical mileage allowance is $0.23/mile, so that's $3381.23. Add those to our uncovered medical expenses and we might maybe qualify for a medical deduction.
I'm sure I've said this before, but it bears repeating: In order to qualify for a medical expense deduction, you have to spend AT LEAST 10% of your taxable income. And you don't deduct the entire amount. You deduct however much you spent OVER the 10%.
Suppose you make $50,000 a year, taxable. You spend $6000 on uncovered medical expenses. Ten percent of your income is $5000. $6000 minus $5000 is $1000. That's your deduction - you'll get an extra $1000 on your tax return to throw at your $6000 bill. And while you can include things like hotels (which we thankfully never needed) you cannot include the restaurant meals (which are FAR more expensive than what we would have made at home!). What this means is that every family in America should have an emergency account set aside in case of medical disaster at least equal to $10 of your taxable income. And, in my opinion, that would be in ADDITION to the six-months'-worth-of-expenses emergency account that the money-management gurus say everybody is supposed to keep on hand anyway. Everybody should have a disability policy to help cover lost income. Very few people I know have either expense pool saved, and almost no one I know has a private disability policy We were lucky - we did, and we needed all three. And now we have neither savings account and have to start over (which we have, but it's a slow process!). True, we were hit with three medical disasters in less than two years, and that emergency bathroom gutting put us back a bit!
One of the things I understand very well from serving the working poor is that most people are only one injury or illness away from abject poverty. I have seen, many, many times over the years, how that one illness can put people behind on their rent or mortgage, leaving them homeless. How people have to choose between food and rent while medical bills pile up. I've seen homeowners go from mortgage-free to underwater to try to finance medical expenses. I've seen people choose to stop treating their blood pressure and diabetes because they have no insurance are are ashamed to ask for help, or admit they need it - until they have a stroke or go into kidney failure and have no remaining options. When you've finally lost everything, then the government will step in and help. But you have to have lost EVERYTHING.
We are the lucky ones, as luck goes. We have supportive friends who have kicked in over and over and over (and over and OVER) again when we needed a boost. We had savings, and disability insurance. We've kept up with the mortgage and the credit cards are clear. Babygirl got a kidney, while so many are still waiting. We've come a long way, and traveled safely.
And that isn't all about the miles.
DeeDee
I did some math. We could have driven to my Aunt's in Sacremento, and back. Almost three times. We could have driven to my sister-in-law in Tampa Florida - SIX times. We could have mixed it up: One trip to Sacremento, two to Tampa, and two to Disney's Magic Kingdom. Or hey - we have friends in Austin! We could go there. California. Tampa. AND Magic Kingdom, and have some miles leftover.
You get the idea. We did a LOT of driving. I haven't calculated the tolls paid, but at roughly $24/Philly trip, with (I think) 34 trips, that's $816. The medical mileage allowance is $0.23/mile, so that's $3381.23. Add those to our uncovered medical expenses and we might maybe qualify for a medical deduction.
I'm sure I've said this before, but it bears repeating: In order to qualify for a medical expense deduction, you have to spend AT LEAST 10% of your taxable income. And you don't deduct the entire amount. You deduct however much you spent OVER the 10%.
Suppose you make $50,000 a year, taxable. You spend $6000 on uncovered medical expenses. Ten percent of your income is $5000. $6000 minus $5000 is $1000. That's your deduction - you'll get an extra $1000 on your tax return to throw at your $6000 bill. And while you can include things like hotels (which we thankfully never needed) you cannot include the restaurant meals (which are FAR more expensive than what we would have made at home!). What this means is that every family in America should have an emergency account set aside in case of medical disaster at least equal to $10 of your taxable income. And, in my opinion, that would be in ADDITION to the six-months'-worth-of-expenses emergency account that the money-management gurus say everybody is supposed to keep on hand anyway. Everybody should have a disability policy to help cover lost income. Very few people I know have either expense pool saved, and almost no one I know has a private disability policy We were lucky - we did, and we needed all three. And now we have neither savings account and have to start over (which we have, but it's a slow process!). True, we were hit with three medical disasters in less than two years, and that emergency bathroom gutting put us back a bit!
One of the things I understand very well from serving the working poor is that most people are only one injury or illness away from abject poverty. I have seen, many, many times over the years, how that one illness can put people behind on their rent or mortgage, leaving them homeless. How people have to choose between food and rent while medical bills pile up. I've seen homeowners go from mortgage-free to underwater to try to finance medical expenses. I've seen people choose to stop treating their blood pressure and diabetes because they have no insurance are are ashamed to ask for help, or admit they need it - until they have a stroke or go into kidney failure and have no remaining options. When you've finally lost everything, then the government will step in and help. But you have to have lost EVERYTHING.
We are the lucky ones, as luck goes. We have supportive friends who have kicked in over and over and over (and over and OVER) again when we needed a boost. We had savings, and disability insurance. We've kept up with the mortgage and the credit cards are clear. Babygirl got a kidney, while so many are still waiting. We've come a long way, and traveled safely.
And that isn't all about the miles.
DeeDee
Sunday, December 23, 2012
Welcome to The Bench....
Theologically speaking, I truly believe that when I die I will go straight to heaven. But our family has an ongoing joke about having to make a stop on the way there.....at The Bench.
The Bench is on the warm side of Purgatory. We can tell because we frequently smell bacon cooking.....our bacon, as it were. It's not uncommon for someone in the family to say something, well, hysterically funny but rather unkind, and then rub their hiney and say, "Do you smell bacon?" We figure The Bench has our family name carved on the back. I might stay there so long the grandkids will meet me there.
Today is my Mom's 75th birthday. In anticipation of this event, Babygirl and her cousin were baking sugar cookies. I was cleaning, and Hubby was putting together a fantastic lasagna. Some distance separated us all, and none of us could see out of the same windows.
I suddenly heard Hubby exclaim, "Well, speak of the Devil!"
From the other side of the house came this reply from Babygirl: "Oh, Grandma is here??"
Welcome to The Bench, Babygirl. I'll save you a seat.
DeeDee
The Bench is on the warm side of Purgatory. We can tell because we frequently smell bacon cooking.....our bacon, as it were. It's not uncommon for someone in the family to say something, well, hysterically funny but rather unkind, and then rub their hiney and say, "Do you smell bacon?" We figure The Bench has our family name carved on the back. I might stay there so long the grandkids will meet me there.
Today is my Mom's 75th birthday. In anticipation of this event, Babygirl and her cousin were baking sugar cookies. I was cleaning, and Hubby was putting together a fantastic lasagna. Some distance separated us all, and none of us could see out of the same windows.
I suddenly heard Hubby exclaim, "Well, speak of the Devil!"
From the other side of the house came this reply from Babygirl: "Oh, Grandma is here??"
Welcome to The Bench, Babygirl. I'll save you a seat.
DeeDee
Friday, December 21, 2012
Liver....
I touched briefly on Babygirl's lab results yesterday in the middle of my self-centered rant. But since this blog is ostensibly about HER, I figured I'd best fill you all in.
Her kidney is very happy, holding to a creatinine of 0.8, even when she was sick last month. She remains anemic despite the fact that her new kidney should be producing adequate amounts of erythropoetin. I suspect that she may have been anemic before she developed kidney disease. We never checked, so we'll never know.
But her liver is not happy. She had some liver function elevations immediately after her transplant, with some numbers running as much as 15 times normal. This is not as severe. She has a couple of tests running about three times normal, but since they've been ENTIRELY normal since shortly after transplant, it's not a good thing.
The theory is that she is taking so much Tylenol (about a hundred 500 mg tablets every month) that her liver can't quite tolerate it. We've been instructed to get the 325 mg tablets (harder to find but our pharmacy is putting some aside for us) and to try to not have her take even those as much. So now what are we to do for the headaches? They had no suggestions.
They gave her new medications for the nausea that comes from the headaches since the one she was using was helping with neither the headaches nor the nausea. She's lost six pounds since her hospital stay three weeks ago. The steroid-induced weight needed to come down, for sure, but having her so nauseated that she can't eat for a month wouldn't have been my first plan for weight management.
They want to recheck her in a month. But since neurology wanted to see her in mid-January, that's when we'll likely go back. Since they area already moving at the speed of snails to fix her headaches, I'd hate to miss an appointment.
We haven't managed a full month with no travel yet.
DeeDee
Her kidney is very happy, holding to a creatinine of 0.8, even when she was sick last month. She remains anemic despite the fact that her new kidney should be producing adequate amounts of erythropoetin. I suspect that she may have been anemic before she developed kidney disease. We never checked, so we'll never know.
But her liver is not happy. She had some liver function elevations immediately after her transplant, with some numbers running as much as 15 times normal. This is not as severe. She has a couple of tests running about three times normal, but since they've been ENTIRELY normal since shortly after transplant, it's not a good thing.
The theory is that she is taking so much Tylenol (about a hundred 500 mg tablets every month) that her liver can't quite tolerate it. We've been instructed to get the 325 mg tablets (harder to find but our pharmacy is putting some aside for us) and to try to not have her take even those as much. So now what are we to do for the headaches? They had no suggestions.
They gave her new medications for the nausea that comes from the headaches since the one she was using was helping with neither the headaches nor the nausea. She's lost six pounds since her hospital stay three weeks ago. The steroid-induced weight needed to come down, for sure, but having her so nauseated that she can't eat for a month wouldn't have been my first plan for weight management.
They want to recheck her in a month. But since neurology wanted to see her in mid-January, that's when we'll likely go back. Since they area already moving at the speed of snails to fix her headaches, I'd hate to miss an appointment.
We haven't managed a full month with no travel yet.
DeeDee
Thursday, December 20, 2012
Week Eighty-seven - The Best Laid Plans....
Not ten minutes after I published my last post (http://kidneedsakidney.blogspot.com/2012/12/night-off.html) I got a call from Hubby.
"I'm in the rest area. And Rhonda is dead."
Less than one week ago our mechanic put a SECOND new alternator in. We had no problem on the four-hundred-mile round trip to my Dad's, or on the week's worth of running around since then. Hubby didn't notice any problems, but Babygirl needed a potty break. And just as he pulled off the highway, electrical stuff started fading out. Radio. Heat flow. Lights. Turn signal. All symptoms he's now familiar with because I've described them to him. Twice.
He managed to get Rhonda to a legal parking place, and was unable to get her restarted.
I was still at work when he called. I had to announce the problem, set people to rescheduling today's patients, finish all the paperwork I could and run. Somewhere along the way I realized I needed to find someone to care for the dog. One of my best friends, along with Babygirl's best friend and our usual dog-watcher, had just that day packed up and moved away to Florida. JuJuBee has no phone, so that left Curlygirl, who, bless her, packed up Squeaker, herself, and all her laundry and climbed into the big Green Goose van and came to spend the night.
From the time of Hubby's call to my departure from home: Ninety minutes. No time available for the good cry I truly, truly needed.
We left the Honda at the rest stop, and traveled on to my Sis-in-law's house, discussing options all the way. We got Babygirl to the doctor this morning (kidney is doing well, liver is not at all happy with the amount of Tylenol she's been using for the headaches, no new suggestions for what to do about them except to use LESS Tylenol) and returned to our home base (through the worst traffic we've dealt with in Philly so far EVER) to see what we could do about the car.
My plan was elegantly simple. I called uHaul and asked if we could rent a towing system, so the Goose could pull Rhonda home. The simple answer is "yes, we have that equipment for $50." The complicated answer was that they wouldn't rent it to US because the Goose is not powerful enough (per their standard rules) to tow Rhonda without risk to our transmission. Renting one of their trucks plus the towing system was over $250. Having Rhonda towed home was $480. Towing her somewhere local for repair was $80.
By the time we met up with the tow truck it was nearly four o'clock. We were ninety miles from home and had to get to the pharmacy by six without fail to pick up new medications. And Babygirl had a headache so bad she wanted to throw up.
We're home. We had KFC for dinner, again, and Hubby is taking Curlygirl, Squeaker, and her 683 pounds of clean laundry home. I'm not actually sure where Rhonda is, what's wrong with her, how much it'll cost to fix her, how we'll get her home when she's repaired or whether or not we'll keep her when she's fixed.
The only good part of this story is that I got to have a drink last night with my best friend and my Hubby. But as my sister-in-law so eloquently said while we were having our drinks, "I'm SICK of making lemonade."
Yup. Enough with the freakin' lemons.
DeeDee
"I'm in the rest area. And Rhonda is dead."
Less than one week ago our mechanic put a SECOND new alternator in. We had no problem on the four-hundred-mile round trip to my Dad's, or on the week's worth of running around since then. Hubby didn't notice any problems, but Babygirl needed a potty break. And just as he pulled off the highway, electrical stuff started fading out. Radio. Heat flow. Lights. Turn signal. All symptoms he's now familiar with because I've described them to him. Twice.
He managed to get Rhonda to a legal parking place, and was unable to get her restarted.
I was still at work when he called. I had to announce the problem, set people to rescheduling today's patients, finish all the paperwork I could and run. Somewhere along the way I realized I needed to find someone to care for the dog. One of my best friends, along with Babygirl's best friend and our usual dog-watcher, had just that day packed up and moved away to Florida. JuJuBee has no phone, so that left Curlygirl, who, bless her, packed up Squeaker, herself, and all her laundry and climbed into the big Green Goose van and came to spend the night.
From the time of Hubby's call to my departure from home: Ninety minutes. No time available for the good cry I truly, truly needed.
We left the Honda at the rest stop, and traveled on to my Sis-in-law's house, discussing options all the way. We got Babygirl to the doctor this morning (kidney is doing well, liver is not at all happy with the amount of Tylenol she's been using for the headaches, no new suggestions for what to do about them except to use LESS Tylenol) and returned to our home base (through the worst traffic we've dealt with in Philly so far EVER) to see what we could do about the car.
My plan was elegantly simple. I called uHaul and asked if we could rent a towing system, so the Goose could pull Rhonda home. The simple answer is "yes, we have that equipment for $50." The complicated answer was that they wouldn't rent it to US because the Goose is not powerful enough (per their standard rules) to tow Rhonda without risk to our transmission. Renting one of their trucks plus the towing system was over $250. Having Rhonda towed home was $480. Towing her somewhere local for repair was $80.
By the time we met up with the tow truck it was nearly four o'clock. We were ninety miles from home and had to get to the pharmacy by six without fail to pick up new medications. And Babygirl had a headache so bad she wanted to throw up.
We're home. We had KFC for dinner, again, and Hubby is taking Curlygirl, Squeaker, and her 683 pounds of clean laundry home. I'm not actually sure where Rhonda is, what's wrong with her, how much it'll cost to fix her, how we'll get her home when she's repaired or whether or not we'll keep her when she's fixed.
The only good part of this story is that I got to have a drink last night with my best friend and my Hubby. But as my sister-in-law so eloquently said while we were having our drinks, "I'm SICK of making lemonade."
Yup. Enough with the freakin' lemons.
DeeDee
Wednesday, December 19, 2012
Night Off.....
Babygirl and Hubby are driving off to Philly without me tonight. They'll be seeing the transplant team and coming home on Thursday (Lord willing and the numbers don't rise). I'm on my own for an entire evening.
Don't get me wrong, I love my family, and I love spending time with them more than anything. But now and again I like to just be alone inside my own head. I'll finish my workday, go to Bible study, and then, if I feel like it, I'll do some shopping. Or not. Or maybe not for groceries or Christmas, just for me....oh, wait, I HATE that kind of shopping, never mind!
I can check out Ollie's and see if they have any cheap interesting books. I can go home, light a fire and enjoy the Christmas tree. I can take a walk and check out my neighbors' lights.
It's nice to have a stretch of time (however brief) where there is no concrete plan, no pressing 'to do' list, no one pulling on my pant leg begging for attention or food. However lovely it is to be needed, however fulfilling it is to be necessary; it's equally lovely to let the weight of the responsibility slide off my shoulders and rest somewhere, ANYwhere, else.
DeeDee
Don't get me wrong, I love my family, and I love spending time with them more than anything. But now and again I like to just be alone inside my own head. I'll finish my workday, go to Bible study, and then, if I feel like it, I'll do some shopping. Or not. Or maybe not for groceries or Christmas, just for me....oh, wait, I HATE that kind of shopping, never mind!
I can check out Ollie's and see if they have any cheap interesting books. I can go home, light a fire and enjoy the Christmas tree. I can take a walk and check out my neighbors' lights.
It's nice to have a stretch of time (however brief) where there is no concrete plan, no pressing 'to do' list, no one pulling on my pant leg begging for attention or food. However lovely it is to be needed, however fulfilling it is to be necessary; it's equally lovely to let the weight of the responsibility slide off my shoulders and rest somewhere, ANYwhere, else.
DeeDee
Monday, December 17, 2012
Hugging.....
There've been a million million Facebook posts about the horrible shootings in Connecticut. Debates about gun control. Expressions of grief and horror about precious lives cut short. Posts about twenty new angels. Admonitions to 'hug your kids,' as if that will protect them, or change what happens to them when our backs are turned.
Please don't think that I view these shootings coldly. We had a mass murder here in our town a few years ago, and we are still reeling from its effects on our community. Every time I hear of another one, my heart simply tears into aching pieces. I've held a mother in my arms as she grieved the senseless loss of her young daughter. I 'get it' as well as anyone who has not actually lost a loved one in such a way can.
But there is SO much 'magical thinking' out there. So many of us look for answers, not so much in support of those who have lost loved ones, but in hope of avoiding such disasters in our own lives. And as appallingly frequent as these utterly newsworthy events are, most parental losses occur quietly, one child at a time.
Cancer. SIDS. Cystic fibrosis. Kidney disease. Sickle cell. Asthma. Eating disorders.
Each and every one of these diseases kills more children each year than mass homocide. Each one leaves hundreds of parents to face holidays with empty arms. Each of these leaves brothers and sisters, grandparents and cousins, lost and grieving, regardless of the time of year. And most of them cause years of suffering beforehand.
We learned that hard way that bad things happen, and that we can do nothing about it.
By all means do whatever God calls you to do in response to this sad event. And do hug your kids. But do not fail to remember to hug the parents around you - the ones whose children struggle and suffer, and the ones whose children have gone home. Those parents need you, really need you.
DeeDee
Please don't think that I view these shootings coldly. We had a mass murder here in our town a few years ago, and we are still reeling from its effects on our community. Every time I hear of another one, my heart simply tears into aching pieces. I've held a mother in my arms as she grieved the senseless loss of her young daughter. I 'get it' as well as anyone who has not actually lost a loved one in such a way can.
But there is SO much 'magical thinking' out there. So many of us look for answers, not so much in support of those who have lost loved ones, but in hope of avoiding such disasters in our own lives. And as appallingly frequent as these utterly newsworthy events are, most parental losses occur quietly, one child at a time.
Cancer. SIDS. Cystic fibrosis. Kidney disease. Sickle cell. Asthma. Eating disorders.
Each and every one of these diseases kills more children each year than mass homocide. Each one leaves hundreds of parents to face holidays with empty arms. Each of these leaves brothers and sisters, grandparents and cousins, lost and grieving, regardless of the time of year. And most of them cause years of suffering beforehand.
We learned that hard way that bad things happen, and that we can do nothing about it.
By all means do whatever God calls you to do in response to this sad event. And do hug your kids. But do not fail to remember to hug the parents around you - the ones whose children struggle and suffer, and the ones whose children have gone home. Those parents need you, really need you.
DeeDee
Friday, December 14, 2012
Week Eighty-Six - Superstition.....
We are leaving today to visit my Dad. It's an annual pre-Christmas journey. I love to go despite the drive because it gives me one solid day where I have nothing to do and no responsibility beyond picking up a couple of the famous local pizzas. Despite the fact that we are traveling four hours directly into the snow belt, we've never had weather so bad that we've had to cancel, turn back, or stay extra days. Rhonda the Honda had her obligatory pre-trip breakdown yesterday (the alternator that the garage JUST installed died - easy fix, no charge), so I am superstitiously confident that she'll make it there and back, no problem.
The same feeling surrounds my thoughts about Babygirl. I realize that statistically speaking, she is just as likely to get sick five minutes after her last illness as five months after, but still.... I feel like the recent hospitalization has "sick-proofed" us for the holidays. I expect she'll have headaches, but that's our 'new normal' anyway, right? After all, she's been averaging one hospital stay every two months - February, April, May/June, August and November/December (we've been in twice for 'month changes'). So we should be in the clear until February unless the germ gods notice that we skipped October.
Seriously. Knock wood, throw salt over your shoulder, avoid black cats and stay away from ladders. All of those make as much sense as most of my thinking regarding Babygirl's struggles. Near as I can tell, there is no way to 'disaster-proof'' our lives. It's just more Magical Thinking.
DeeDee
The same feeling surrounds my thoughts about Babygirl. I realize that statistically speaking, she is just as likely to get sick five minutes after her last illness as five months after, but still.... I feel like the recent hospitalization has "sick-proofed" us for the holidays. I expect she'll have headaches, but that's our 'new normal' anyway, right? After all, she's been averaging one hospital stay every two months - February, April, May/June, August and November/December (we've been in twice for 'month changes'). So we should be in the clear until February unless the germ gods notice that we skipped October.
Seriously. Knock wood, throw salt over your shoulder, avoid black cats and stay away from ladders. All of those make as much sense as most of my thinking regarding Babygirl's struggles. Near as I can tell, there is no way to 'disaster-proof'' our lives. It's just more Magical Thinking.
DeeDee
Monday, December 10, 2012
Red.....
After my meltdown at CHOP the night of Babygirl's spinal tap, hospital staff wheeled her stretcher back to her room. We were accompanied by a security guard, not because they thought I'd lost my mind, but because there is a system of 'patient only' elevators that are operated by staff ID badges. These can be called ahead for by security and held where they are needed - a very important feature when one is transporting a very sick kid.
While this journey was in progress, our security guard, who clearly had a bead on how close I was to complete hysteria, stopped with us, keyed into a room off the hallway we were using, and came out with a handmade quilt. She covered my sleeping Babygirl with it, saying, "She looks like a girl who likes red." The quilt is red, white and blue on the patterned side, and red, white and black on the back.
Babygirl was wearing hospital scrubs and draped in white hospital blankets, leaving only her face and long black hair showing.
But she was right, somehow. Babygirl's favorite color IS red, and coupling red with black and white defines her usual use of the color. It was a comforting moment.
There are a variety of organizations who make quilts for sick children - she received a very small one when she got her kidney transplant. Whoever the folks are who make them (http://www.quiltsforkids.org/ and http://www.projectlinus.org/ among others), we appreciate them. They have brought bright spots to many dark days for sick and needy children.
And Babygirl is thrilled to have the quilt - she has it displayed across the back of her futon/couch in her room.
DeeDee
While this journey was in progress, our security guard, who clearly had a bead on how close I was to complete hysteria, stopped with us, keyed into a room off the hallway we were using, and came out with a handmade quilt. She covered my sleeping Babygirl with it, saying, "She looks like a girl who likes red." The quilt is red, white and blue on the patterned side, and red, white and black on the back.
Babygirl was wearing hospital scrubs and draped in white hospital blankets, leaving only her face and long black hair showing.
But she was right, somehow. Babygirl's favorite color IS red, and coupling red with black and white defines her usual use of the color. It was a comforting moment.
There are a variety of organizations who make quilts for sick children - she received a very small one when she got her kidney transplant. Whoever the folks are who make them (http://www.quiltsforkids.org/ and http://www.projectlinus.org/ among others), we appreciate them. They have brought bright spots to many dark days for sick and needy children.
And Babygirl is thrilled to have the quilt - she has it displayed across the back of her futon/couch in her room.
DeeDee
Sunday, December 9, 2012
Serenity....
Babygirl continues to have headaches daily. Each morning she comes down with her sunglasses on, takes her meds and goes back to bed. Even our optimism has a pessimistic sound to it. Earlier this week Hubby, in a totally hopeful tone of voice, said, "Well, I don't think she looks QUITE as terrible today as she did yesterday!"
And for what it's worth, I agree with him. She has either so adjusted to her level of suffering that she is able to shrug it off better, or she is actually suffering less. We managed to to a bit of Christmas shopping two days in a row, and she insisted on going to our church this afternoon to help decorate the sanctuary.
While we were out shopping her eye was caught by a display of $50 sterling silver bracelets engraved with various encouraging quotations. We read several of them together.
On the way home she said, thoughtfully, "I know those bracelets are really expensive, but I really loved the last one we looked at."
"God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
I'm reasonably sure she's never seen or heard that prayer before. And I'm touched and impressed that that was the one that stuck in her mind. I asked her whether it was the prayer or the bracelet that she loved the most. "The prayer."
I have no problem with the price. If I had it I'd pay a hundred times that much to make it possible for her to hold such a thought in her hands and heart. But I know her well enough to know that a bracelet won't survive long in her care, and if it's the prayer that matters, and it is, there are hundreds of ways to make that a visible part of her world.
I see a trip to the Christian bookstore in my immediate future. I'm betting I can find a poster or a plaque that will look lovely in her room, and possibly a necklace to give us serenity when we're on the road.
DeeDee
And for what it's worth, I agree with him. She has either so adjusted to her level of suffering that she is able to shrug it off better, or she is actually suffering less. We managed to to a bit of Christmas shopping two days in a row, and she insisted on going to our church this afternoon to help decorate the sanctuary.
While we were out shopping her eye was caught by a display of $50 sterling silver bracelets engraved with various encouraging quotations. We read several of them together.
On the way home she said, thoughtfully, "I know those bracelets are really expensive, but I really loved the last one we looked at."
"God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."
I'm reasonably sure she's never seen or heard that prayer before. And I'm touched and impressed that that was the one that stuck in her mind. I asked her whether it was the prayer or the bracelet that she loved the most. "The prayer."
I have no problem with the price. If I had it I'd pay a hundred times that much to make it possible for her to hold such a thought in her hands and heart. But I know her well enough to know that a bracelet won't survive long in her care, and if it's the prayer that matters, and it is, there are hundreds of ways to make that a visible part of her world.
I see a trip to the Christian bookstore in my immediate future. I'm betting I can find a poster or a plaque that will look lovely in her room, and possibly a necklace to give us serenity when we're on the road.
DeeDee
Saturday, December 8, 2012
Too Much Light.....
Each year in Babygirl's memory we have trekked out to a nearby tree farm and hiked from one corner to the other and back to select a tree. We've squelched through mud, cold rain, snow, and one memorable year, ice disguised as mud. We've done it with as many as seven kids, and often with friends thrown in.
Thanksgiving was early this year, and we didn't think a fresh tree would be looking to healthy by Christmas if we cut one on the 24th of November, so we decided that December 2nd would be our tree trek this year.
Until Babygirl got sick. Again.
Five days in the hospital is a physical challenge. Three nights of almost no sleep because your child is suffering is doubly disabling because it completely takes the heart out of you. Somewhere around Thursday afternoon I started to feel as if maybe, just maybe, I was starting to recover. By last evening, it was clear that although I'm certainly better rested than I was on Monday, I wasn't going to have the energy to do everything I need to do this weekend - get and decorate a tree, clean the house, and do some much-delayed Christmas shopping. And Hubby has his own dark sorrow. His Dad died last year on Christmas Eve, and he is grieving still.
Hubby and I talked it over and made a tough call - buy a pre-cut tree locally.
Babygirl was disappointed. Although I certainly remember many times when I've gone to a local shop to get a tree, she doesn't. And the break in tradition saddened her. And since we usually go in the morning to get a tree, we decorate it as soon as it goes up. But last night, the tree went up at 9:30 PM. So no lights. No decorations. No angel.
I had a bit of insomnia last night, and when I finally gave in and got up at 4 AM, I decided to tackle the tree lights. Each year at least one of last year's string of lights expires. In anticipation of this, I had gotten some of the new LED light strings in a pre-Christmas sale. I tested the old lights, and had seven working strands of 100. It's a smaller tree than usual, so it should be enough, I think.
Until I got to the bottom foot of the tree and ran out. I pulled out the new lights. Not a good color match (and LED lights appear to VIBRATE when they are handled - a nightmare for the migraineur!). Hoping that it wouldn't be too noticeable, I strung them and stepped back. UghUghUgh.
I got another cup of coffee and sat down to consider the matter. I can either re-string the entire tree, leave the bottom foot a bit dark, or add another layer of lights over the ones that are already there to make it blend. I opt for the extra layer of lights.
I was thinking as I worked that this was going to be entirely too much light. But then.....
In this darkest season of the year, in this dark time in our lives, how can we have too much light? As we celebrate the arrival of The Light in our lives, how can we forget that "the people who walked in darkness have seen a great light"? How can we forget the angels, the proclamation of peace on earth, and the overwhelming light of the Star?
I had just finished when Babygirl came down for her morning medications at seven.
When she saw the tree, all 1000 lights were reflected in her beautiful smile. Despite the sunglasses, her heart clearly agreed - there is no such thing as too much light.
DeeDee
Thanksgiving was early this year, and we didn't think a fresh tree would be looking to healthy by Christmas if we cut one on the 24th of November, so we decided that December 2nd would be our tree trek this year.
Until Babygirl got sick. Again.
Five days in the hospital is a physical challenge. Three nights of almost no sleep because your child is suffering is doubly disabling because it completely takes the heart out of you. Somewhere around Thursday afternoon I started to feel as if maybe, just maybe, I was starting to recover. By last evening, it was clear that although I'm certainly better rested than I was on Monday, I wasn't going to have the energy to do everything I need to do this weekend - get and decorate a tree, clean the house, and do some much-delayed Christmas shopping. And Hubby has his own dark sorrow. His Dad died last year on Christmas Eve, and he is grieving still.
Hubby and I talked it over and made a tough call - buy a pre-cut tree locally.
Babygirl was disappointed. Although I certainly remember many times when I've gone to a local shop to get a tree, she doesn't. And the break in tradition saddened her. And since we usually go in the morning to get a tree, we decorate it as soon as it goes up. But last night, the tree went up at 9:30 PM. So no lights. No decorations. No angel.
I had a bit of insomnia last night, and when I finally gave in and got up at 4 AM, I decided to tackle the tree lights. Each year at least one of last year's string of lights expires. In anticipation of this, I had gotten some of the new LED light strings in a pre-Christmas sale. I tested the old lights, and had seven working strands of 100. It's a smaller tree than usual, so it should be enough, I think.
Until I got to the bottom foot of the tree and ran out. I pulled out the new lights. Not a good color match (and LED lights appear to VIBRATE when they are handled - a nightmare for the migraineur!). Hoping that it wouldn't be too noticeable, I strung them and stepped back. UghUghUgh.
I got another cup of coffee and sat down to consider the matter. I can either re-string the entire tree, leave the bottom foot a bit dark, or add another layer of lights over the ones that are already there to make it blend. I opt for the extra layer of lights.
I was thinking as I worked that this was going to be entirely too much light. But then.....
In this darkest season of the year, in this dark time in our lives, how can we have too much light? As we celebrate the arrival of The Light in our lives, how can we forget that "the people who walked in darkness have seen a great light"? How can we forget the angels, the proclamation of peace on earth, and the overwhelming light of the Star?
I had just finished when Babygirl came down for her morning medications at seven.
When she saw the tree, all 1000 lights were reflected in her beautiful smile. Despite the sunglasses, her heart clearly agreed - there is no such thing as too much light.
DeeDee
Wednesday, December 5, 2012
Week Eighty Five - Magical Thinking....
Five days in a hospital gives you lots of stories. You meet a lot of people: Doctors, nurses, housekeeping staff, other parents, chaplains. You meet people who've been around a long time, and those who've just started.
Resident physicians ARE doctors. Their level of experience varies from 4 months to 5 years post medical school graduation. The Fellows have finished residency and are doing specialty training. We are always, and will always be, admitted to nephrology. And we are always placed on the same floor.
I initially thought that 'our' floor was dedicated to kids with kidney disease. It turns out that it's dedicated to the adolescents. The rooms at the end of the hall with the snack bags on the counter? That's the eating disorders section. Kids with diabetes are common. Asthmatics, a dime a dozen. So we see two teams of doctors each day: The nephrology team, and the adolescent team. Each team has Attendings, Fellows, Residents and the occasional student. Generally speaking I have no objection to being "a good teaching case." Lord knows I benefited greatly from the patience of all those patients willing to let me learn what I needed to learn, often at their expense, and not always to their benefit.
But when it comes to procedures I want to know who's going to be poking at my kid. So I'm STILL miffed that I never met the person who performed Babygirl's spinal tap. I have no idea if this was a person who graduated med school in June of 2012 or whether there was some experience there. But on Monday morning I met the neurology resident who innocently let me know that whoever it was who STARTED the tap, she was the one who finished it when that person didn't succeed.
I'd already noticed that there were two puncture marks on Babygirl's back - in fact, I'd taken a picture so Babygirl could see them. If I had given any thought to it at all, I had mentally dismissed the second puncture as a local anaesthetic injection site. In retrospect, that was a silly assumption. Why do a local when the kid is knocked out?
I've done LP's myself. To the best of my recollection, it's a simple test, and of all the ones I did (and I did dozens) I can't recall missing even one. Not even the first one. But I know it happens. I also know (because I did it myself) that it's easy to hit a lumbar nerve in the process.
That's what happened to Babygirl. The worst of the pain for two days after the puncture was a deep burning discomfort down the side of her thighs. Her back hurt, and her head hurt, but it was her legs that were the hardest to bear, and hardest to relieve.
Quite honestly, either person (or both) could have hit those nerves as a normal consequence of the tap. And I'm guessing the consent I signed on arrival allowed for teaching. But I want to think things might have gone better if neurology had been on board from the beginning, in charge of supervision instead of the anaesthesiologist. This thinking is patently illogical. Anaesthesiologists do hundreds and thousands of epidural injections, and the process is nearly identical (and actually somewhat more technically difficult). And does meeting the guy who is going to do the procedure actually make him able to do a better job?
It all comes down to control. All parents with chronically ill children engage in Magical Thinking. "If I do ___________ (fill in with any ridiculous idea, like, say, "meet all my kid's doctors") then my kid will ______________ (fill in THIS blank with any impossible thought, like "be magically cured and go back to the way it used to be"). We might as well determine that we need to learn to walk on water and turn that water into wine in order for our kids to thrive. It's hopelessly hopeless. We can't control what happens, and we can't go back.
We cannot go back.
DeeDee
Resident physicians ARE doctors. Their level of experience varies from 4 months to 5 years post medical school graduation. The Fellows have finished residency and are doing specialty training. We are always, and will always be, admitted to nephrology. And we are always placed on the same floor.
I initially thought that 'our' floor was dedicated to kids with kidney disease. It turns out that it's dedicated to the adolescents. The rooms at the end of the hall with the snack bags on the counter? That's the eating disorders section. Kids with diabetes are common. Asthmatics, a dime a dozen. So we see two teams of doctors each day: The nephrology team, and the adolescent team. Each team has Attendings, Fellows, Residents and the occasional student. Generally speaking I have no objection to being "a good teaching case." Lord knows I benefited greatly from the patience of all those patients willing to let me learn what I needed to learn, often at their expense, and not always to their benefit.
But when it comes to procedures I want to know who's going to be poking at my kid. So I'm STILL miffed that I never met the person who performed Babygirl's spinal tap. I have no idea if this was a person who graduated med school in June of 2012 or whether there was some experience there. But on Monday morning I met the neurology resident who innocently let me know that whoever it was who STARTED the tap, she was the one who finished it when that person didn't succeed.
I'd already noticed that there were two puncture marks on Babygirl's back - in fact, I'd taken a picture so Babygirl could see them. If I had given any thought to it at all, I had mentally dismissed the second puncture as a local anaesthetic injection site. In retrospect, that was a silly assumption. Why do a local when the kid is knocked out?
I've done LP's myself. To the best of my recollection, it's a simple test, and of all the ones I did (and I did dozens) I can't recall missing even one. Not even the first one. But I know it happens. I also know (because I did it myself) that it's easy to hit a lumbar nerve in the process.
That's what happened to Babygirl. The worst of the pain for two days after the puncture was a deep burning discomfort down the side of her thighs. Her back hurt, and her head hurt, but it was her legs that were the hardest to bear, and hardest to relieve.
Quite honestly, either person (or both) could have hit those nerves as a normal consequence of the tap. And I'm guessing the consent I signed on arrival allowed for teaching. But I want to think things might have gone better if neurology had been on board from the beginning, in charge of supervision instead of the anaesthesiologist. This thinking is patently illogical. Anaesthesiologists do hundreds and thousands of epidural injections, and the process is nearly identical (and actually somewhat more technically difficult). And does meeting the guy who is going to do the procedure actually make him able to do a better job?
It all comes down to control. All parents with chronically ill children engage in Magical Thinking. "If I do ___________ (fill in with any ridiculous idea, like, say, "meet all my kid's doctors") then my kid will ______________ (fill in THIS blank with any impossible thought, like "be magically cured and go back to the way it used to be"). We might as well determine that we need to learn to walk on water and turn that water into wine in order for our kids to thrive. It's hopelessly hopeless. We can't control what happens, and we can't go back.
We cannot go back.
DeeDee
Tuesday, December 4, 2012
Dark Nights of the Soul.....
Staying up all night to comfort a child in pain is a dark, dark thing. It's one thing to hold the hand of a daughter in labor. The pain is intense, but the outcome is so joyous a prospect that there is no bottom to the well of support and understanding available.
For a sick child with chronic pain there is no such well. Dealing day to day with a child who is dealing day to day with chronic pain uses up reserves of compassion and tolerance. It's not that you are tired of or angry at the child. You are tired of and angry at the pain. Hugs and hand-holding only get you so far, and both of you end up not even wanting to acknowledge the pain. It becomes the elephant in the room. It becomes the elephant sitting on your optimism, your hope, your resiliency.
Add a new, acute pain to this scenario and you have a recipe for exhaustion and despair. Holding my Babygirl through night after night of pain triggered by the spinal tap hit me below the belt somewhere.
"Breathe through it, baby. If you can't breathe, talk - it will hurt less than crying does."
And talk she did. About how much she hates the pain. How tired she is of the pain. How much she HATES kidney failure, transplants, and hospitals. How much she fears abandonment, death, and being left alone. How she has nightmares about these things, and what those nightmares look like.
Dark nights of the soul, indeed.
Everyone who knows Babygirl is amazed by how well she has handled her illness. But now I know better. It's time to get some outside help.
DeeDee
For a sick child with chronic pain there is no such well. Dealing day to day with a child who is dealing day to day with chronic pain uses up reserves of compassion and tolerance. It's not that you are tired of or angry at the child. You are tired of and angry at the pain. Hugs and hand-holding only get you so far, and both of you end up not even wanting to acknowledge the pain. It becomes the elephant in the room. It becomes the elephant sitting on your optimism, your hope, your resiliency.
Add a new, acute pain to this scenario and you have a recipe for exhaustion and despair. Holding my Babygirl through night after night of pain triggered by the spinal tap hit me below the belt somewhere.
"Breathe through it, baby. If you can't breathe, talk - it will hurt less than crying does."
And talk she did. About how much she hates the pain. How tired she is of the pain. How much she HATES kidney failure, transplants, and hospitals. How much she fears abandonment, death, and being left alone. How she has nightmares about these things, and what those nightmares look like.
Dark nights of the soul, indeed.
Everyone who knows Babygirl is amazed by how well she has handled her illness. But now I know better. It's time to get some outside help.
DeeDee
Monday, December 3, 2012
Last Day In....
We are safe at home. Babygirl has new meds, a written ER plan, but no new advice about how to deal with the headaches day by day. She was pain free all day yesterday, and started a new headache today at dinner.
Some minor questions remain. What's up (or rather down) with her blood pressure? She hasn't restarted her blood pressure meds and as of this morning she was still running low. It's under observation. I'm guessing that it won't take that long to rise and again require medications. We have instructions on what to do about it if it happens. What caused the fever? Aside from one episode of vomitting, she had NO other symptoms. This makes Hubby very nervous, but I don't really care. They did find that funky Group G strep (which usually doesn't make people sick but that she's had twice during illnesses in the past year). The antibiotics she was on IV should have taken care of it, and they want her local doc to do a throat culture when she isn't sick to see if it's just something she carries around.
Other than this, the scary questions have been answered. There are no brain tumors or aneurisms. No spinal tumors. No brain or spinal cord degeneration. No viral, bacterial, parasitic or fungal infections of the spinal fluid. No increased pressure on the brain. No evidence of nerve irritation or damage.
Migraine. Migraine and an unrelated unidentified viral illness, or strep throat variant.
I'll take it.
But I made a suggestion to the staff at CHOP: They should keep a bowl of Valium at the nurses station, kind of like a bowl of M&M's, so the parents can help themselves as needed.
Oh, and they should outlaw this question: "Are you all right?"
DeeDee
Some minor questions remain. What's up (or rather down) with her blood pressure? She hasn't restarted her blood pressure meds and as of this morning she was still running low. It's under observation. I'm guessing that it won't take that long to rise and again require medications. We have instructions on what to do about it if it happens. What caused the fever? Aside from one episode of vomitting, she had NO other symptoms. This makes Hubby very nervous, but I don't really care. They did find that funky Group G strep (which usually doesn't make people sick but that she's had twice during illnesses in the past year). The antibiotics she was on IV should have taken care of it, and they want her local doc to do a throat culture when she isn't sick to see if it's just something she carries around.
Other than this, the scary questions have been answered. There are no brain tumors or aneurisms. No spinal tumors. No brain or spinal cord degeneration. No viral, bacterial, parasitic or fungal infections of the spinal fluid. No increased pressure on the brain. No evidence of nerve irritation or damage.
Migraine. Migraine and an unrelated unidentified viral illness, or strep throat variant.
I'll take it.
But I made a suggestion to the staff at CHOP: They should keep a bowl of Valium at the nurses station, kind of like a bowl of M&M's, so the parents can help themselves as needed.
Oh, and they should outlaw this question: "Are you all right?"
DeeDee
Sunday, December 2, 2012
Kindness, and Finger Crossing.....
Babygirl has been headache-free since this morning at 8. She is clear-eyed and sunglasses-free. We had breakfast together in the cafeteria, and took another walk to get a new movie (Eclipse - sorry, I tried to get one more 'classic' in). She's still not eating much and picked clear liquids for lunch and dinner, but that's not a problem. No more fevers either. If she wakes up without a headache we'll likely be on our way home. Infectious disease has signed off the case, and I've pushed neurology to get some prevention meds started.
Please keep praying, fingers and toes crossed!
Now let me change the subject. Remember the iPod?
I was listening to my iPod when the nurse came in and told Babygirl had been moved upstairs to recover from anaesthesia, a totally unexpected move that in retrospect seems fairly trivial but at the time was rediculously traumatic. Somewhere between there and our return to our hospital room, the iPod vanished. I retraced my steps the next day, going from MRI to PACU and back. I searched our room. I called security and they checked the lost and found and there was no iPod.
Ah, well. Babygirl is doing well and although I can't afford to replace it, I can live without it. Given how hysterical I got over an unexpected elevator ride, I was really not upset about this. It's just stuff, right? And if we've learned nothing else in the past year and a half it's that stuff doesn't matter - people do. In fact, when a dad on our floor was searching for an iPod charger I gave him mine. After all, I'm not going to need it anymore, right?
When I checked my email last night there was a note from a total stranger telling me he thought he'd found something of mine at CHOP, and that he'd turned it in to the lost and found. I checked the time stamp on the email, and it predated my check with security. It was puzzling enough, though, that I physically went to security and asked in person, telling them about the email.
My iPod was right there.
I've emailed back and forth a couple of times with him. He was the young man in the PACU waiting room who magically produced a box of tissues when I started crying. He and another CHOP employee calmed me down and comforted me when I was alone and afraid. They, with the young man who delayed leaving work to escort me to the correct place are the heroes of my stay this week. I'm pretty sure there is nothing in any of their job descriptions that includes tantruming adults, but they were marvelous nonetheless.
Kindness is never wasted. And how hard is it, anyway? I feel like I was repaid in 5 minutes for every time I've been the one to whip out the tissues and hold a hand.
But I think I'm going to need a new iPod charger. Some forms of kindness apparently work out better than others LOL!
DeeDee
Please keep praying, fingers and toes crossed!
Now let me change the subject. Remember the iPod?
I was listening to my iPod when the nurse came in and told Babygirl had been moved upstairs to recover from anaesthesia, a totally unexpected move that in retrospect seems fairly trivial but at the time was rediculously traumatic. Somewhere between there and our return to our hospital room, the iPod vanished. I retraced my steps the next day, going from MRI to PACU and back. I searched our room. I called security and they checked the lost and found and there was no iPod.
Ah, well. Babygirl is doing well and although I can't afford to replace it, I can live without it. Given how hysterical I got over an unexpected elevator ride, I was really not upset about this. It's just stuff, right? And if we've learned nothing else in the past year and a half it's that stuff doesn't matter - people do. In fact, when a dad on our floor was searching for an iPod charger I gave him mine. After all, I'm not going to need it anymore, right?
When I checked my email last night there was a note from a total stranger telling me he thought he'd found something of mine at CHOP, and that he'd turned it in to the lost and found. I checked the time stamp on the email, and it predated my check with security. It was puzzling enough, though, that I physically went to security and asked in person, telling them about the email.
My iPod was right there.
I've emailed back and forth a couple of times with him. He was the young man in the PACU waiting room who magically produced a box of tissues when I started crying. He and another CHOP employee calmed me down and comforted me when I was alone and afraid. They, with the young man who delayed leaving work to escort me to the correct place are the heroes of my stay this week. I'm pretty sure there is nothing in any of their job descriptions that includes tantruming adults, but they were marvelous nonetheless.
Kindness is never wasted. And how hard is it, anyway? I feel like I was repaid in 5 minutes for every time I've been the one to whip out the tissues and hold a hand.
But I think I'm going to need a new iPod charger. Some forms of kindness apparently work out better than others LOL!
DeeDee
Friend or Foe....
Babygirl failed to improve with the first two migraine treatments yesterday. So Neurology and Nephrology put their heads together and picked a third move. Steroids.
Cortisone-family steroids are a two-edged sword for sure. Babygirl takes prednisone 5 mg. daily. This is the lowest she's been on: At various times she been on twenty times as much, and some of the other 'flavors' of the drug (prednisilone among them) have been used in substantial doses as well. Prednisone is one of her anti-rejection medications. Its benefit is that it keeps her immune system from 'seeing' the new kidney. The other benefits of this class of drugs is that they can act as potent anti-inflammatories.
The down side of this class of drugs is a terrifying list of side effects. It makes you more likely to get infections. It causes osteoporosis, weight gain and diabetes. And long-term daily use can convince your adrenal glands that they are no longer needed in a crisis. Steroids are our foes.
And that last one is something no one really thinks about. Your adrenal glands do more than run your fight-or-flight responses. Or to be more precise, you need your fight-or-flight responses in many subtle ways aside from the ability to lift cars off of injured children.
Which brings us to Babygirl. Migraines have an inflammatory component, so high-dose steroids are frequently given to break protracted migraine attacks. This was tried once a couple of weeks ago, although strictly speaking she got a more moderate dose and a rapid taper. So trying a true high-dose pulse is a reasonable thought. Steroids are our friends.
But Babygirl has a fever, origin unknown. Steroids can make infections worse. Her heart has been racing, and her blood pressure is too low OFF of all of her antihypertensive medications. So adding more steroids seems, theoretically, to be a seriously bad idea until you think of this: Her adrenal glands should be producing adrenaline (epinephrine) and other hormones to increase her blood pressure under stress, and they are not. That 5 mg. of prednisone is telling her adrenal glands that they are not really needed right now, thank you. So her body's secondary defenses (fever for example) are trying too hard to fight something that they are not designed to fight.
So they have two reasons to give steroids. Therefore we are in the process of receiving "stress dosing." This is my first experience with using hydrocortisone as anything but a topical cream for bug bites. Babygirl is getting large doses IV every six hours. I failed to ask "how long?" Clearly we aren't going to make it home in time to go Christmas tree hunting this afternoon. I'm homesick.
DeeDee
Cortisone-family steroids are a two-edged sword for sure. Babygirl takes prednisone 5 mg. daily. This is the lowest she's been on: At various times she been on twenty times as much, and some of the other 'flavors' of the drug (prednisilone among them) have been used in substantial doses as well. Prednisone is one of her anti-rejection medications. Its benefit is that it keeps her immune system from 'seeing' the new kidney. The other benefits of this class of drugs is that they can act as potent anti-inflammatories.
The down side of this class of drugs is a terrifying list of side effects. It makes you more likely to get infections. It causes osteoporosis, weight gain and diabetes. And long-term daily use can convince your adrenal glands that they are no longer needed in a crisis. Steroids are our foes.
And that last one is something no one really thinks about. Your adrenal glands do more than run your fight-or-flight responses. Or to be more precise, you need your fight-or-flight responses in many subtle ways aside from the ability to lift cars off of injured children.
Which brings us to Babygirl. Migraines have an inflammatory component, so high-dose steroids are frequently given to break protracted migraine attacks. This was tried once a couple of weeks ago, although strictly speaking she got a more moderate dose and a rapid taper. So trying a true high-dose pulse is a reasonable thought. Steroids are our friends.
But Babygirl has a fever, origin unknown. Steroids can make infections worse. Her heart has been racing, and her blood pressure is too low OFF of all of her antihypertensive medications. So adding more steroids seems, theoretically, to be a seriously bad idea until you think of this: Her adrenal glands should be producing adrenaline (epinephrine) and other hormones to increase her blood pressure under stress, and they are not. That 5 mg. of prednisone is telling her adrenal glands that they are not really needed right now, thank you. So her body's secondary defenses (fever for example) are trying too hard to fight something that they are not designed to fight.
So they have two reasons to give steroids. Therefore we are in the process of receiving "stress dosing." This is my first experience with using hydrocortisone as anything but a topical cream for bug bites. Babygirl is getting large doses IV every six hours. I failed to ask "how long?" Clearly we aren't going to make it home in time to go Christmas tree hunting this afternoon. I'm homesick.
DeeDee
Saturday, December 1, 2012
Cool Runnings...
Yesterday Babygirl and I watched Princess Bride and Hotel for Dogs. But yesterday she was feeling a little bit better. They were ready to discontinue her antibiotics, an important step in getting her home, when she spiked up to 103.6 again. I took the temperature and reported it to the nurse. True to the spirit of the day, she came in, shoved the thermometer between Babygirl's chattering teeth and got a reading of 100.4, which is of no real concern. She went back to giving report (because all potential disasters begin at shift change). Since Babygirl had just been given a dose of Tylenol, I felt it was important to document that she really, really had a fever before it kicked in. I rechecked it axillary (armpit). 103.4. I went back to the nurses station, apologized for having a problem at shift change but insisted that she come back and redo it. Yup. Over 103. This of course gets a call to the doc, and the antibiotics are reinstated before she's even missed a dose.
It was a long night. Leg and back pain from the spinal tap. Headache. Fever and chills. I got a couple hours' sleep a couple of times.
Today she's still on antibiotics. Still running well over 103 whenever the Tylenol wears out. Taking oxycodone for headaches and leg pain.
Neuro finally arrived today. Turns out that no one ever actually formally consulted them. The young lady who came had already read the chart, had a good grip on the story, the labs, the MRI and the spinal tap. She is putting a plan in place that will keep trying new medications until the headache breaks. She agrees that this fever episode likely has nothing to do with the headaches, and they will proceed as if it doesn't.
It sounds great in theory. Like the Jamaican bobsled team. How it works in actual fact will be interesting to see. So Babygirl and I are going to watch Cool Runnings today, the best anti-depressant movie that ever was. Beating the odds and triumphing over adversity are themes that resonate for us today.
"Peace be the journey."
DeeDee
It was a long night. Leg and back pain from the spinal tap. Headache. Fever and chills. I got a couple hours' sleep a couple of times.
Today she's still on antibiotics. Still running well over 103 whenever the Tylenol wears out. Taking oxycodone for headaches and leg pain.
Neuro finally arrived today. Turns out that no one ever actually formally consulted them. The young lady who came had already read the chart, had a good grip on the story, the labs, the MRI and the spinal tap. She is putting a plan in place that will keep trying new medications until the headache breaks. She agrees that this fever episode likely has nothing to do with the headaches, and they will proceed as if it doesn't.
It sounds great in theory. Like the Jamaican bobsled team. How it works in actual fact will be interesting to see. So Babygirl and I are going to watch Cool Runnings today, the best anti-depressant movie that ever was. Beating the odds and triumphing over adversity are themes that resonate for us today.
"Peace be the journey."
DeeDee
Friday, November 30, 2012
In an Old House in Paris....
It's been one of THOSE days. The kind where something goes haywire first thing in the morning and then everything from there on follows suit. It started with breakfast.
Last post I mentioned that breakfast may have been an error due to the upcoming procedures. Turns out, it was. When the resident came around after breakfast, she realized that there would only be 6 hours from meal to procedure instead of the required 8. She promised to alert anaesthesia. We didn't get word that we needed to change the time, so the nurse took us down at 1 o'clock as instructed. Turns out that the resident failed to tell anyone about the meal error, so we were sent back to the floor - "Come back at three."
The beauty of being the 1 o'clock appointment is that you're the first of the afternoon. Not true of the 3 PM appointment. Babygirl was taken into MRI at 4. But before they took her I was made aware that the spinal tap would be done by a resident (okay), under the supervision of the anaesthesiologist instead of the neurologist ( less okay). I didn't have time to contemplate that before she went to sleep.
After the MRI's and the tap, a nurse came to tell me she had been taken to PACU (where?). She gave me the wheelchair we'd come with because all of Babygirl's stuff was sitting on it, and told me to take the elevator to the 3rd floor and 'go to PACU.' The 3rd floor was deserted, and there were no signs anywhere that would give me a clue which of 4 different directions I should go. I finally ran into someone who walked me there, and got me into the same waiting room where we'd waited during Babygirl's transplant.
By this time I was somewhere far beyond exhausted and maximally stressed. The poor young man at the desk asked if I was okay. WHY people ask if you are okay when you look like a grenade with the pin pulled is beyond me. Why ANY employee of a hospital specializing in desperately ill children would ask ANY parent there if they are okay defies all reason.
I burst into tears. I ranted about the fact that NO ONE told me I would need to be coming to PACU - why the hell not send me THERE to wait in the first place? NO ONE came to talk to me about the MRI results or the results of the spinal tap. And NO ONE told me how to get where I was going in a deserted building.
They offered tissues. Ginger ale. Tea. Sympathy. And got me to Babygirl, who was just waking up, shivering in reaction to the meds. We got back to our room where I let fly at the night resident about the lack of information. About the fact that we STILL haven't seen a neurologist. About the fact that the neurology team scheduled the damned tests and then didn't actually have anything to do with performing those tests. About the fact that I never even for one second met the guy (gal?) who stuck a 6 inch long needle in my kid's back.
The rest of this evening has been trying. Babygirl has just now drifted off to sleep after a lot of pain, chills, and tears. Thankfully we had picked up a collection of Madeline books in the hospital library, and reading about Paris, and the soothing language of the stories helped calm her down and rest her. I didn't need the book. I have most of them memorized.
"In an old house in Paris that was covered in vines,
Lived twelve little girls in two straight lines.....
The smallest one was Madeline."
I suspect it will be a long night. And somewhere along the way I misplaced my iPod.
DeeDee
Last post I mentioned that breakfast may have been an error due to the upcoming procedures. Turns out, it was. When the resident came around after breakfast, she realized that there would only be 6 hours from meal to procedure instead of the required 8. She promised to alert anaesthesia. We didn't get word that we needed to change the time, so the nurse took us down at 1 o'clock as instructed. Turns out that the resident failed to tell anyone about the meal error, so we were sent back to the floor - "Come back at three."
The beauty of being the 1 o'clock appointment is that you're the first of the afternoon. Not true of the 3 PM appointment. Babygirl was taken into MRI at 4. But before they took her I was made aware that the spinal tap would be done by a resident (okay), under the supervision of the anaesthesiologist instead of the neurologist ( less okay). I didn't have time to contemplate that before she went to sleep.
After the MRI's and the tap, a nurse came to tell me she had been taken to PACU (where?). She gave me the wheelchair we'd come with because all of Babygirl's stuff was sitting on it, and told me to take the elevator to the 3rd floor and 'go to PACU.' The 3rd floor was deserted, and there were no signs anywhere that would give me a clue which of 4 different directions I should go. I finally ran into someone who walked me there, and got me into the same waiting room where we'd waited during Babygirl's transplant.
By this time I was somewhere far beyond exhausted and maximally stressed. The poor young man at the desk asked if I was okay. WHY people ask if you are okay when you look like a grenade with the pin pulled is beyond me. Why ANY employee of a hospital specializing in desperately ill children would ask ANY parent there if they are okay defies all reason.
I burst into tears. I ranted about the fact that NO ONE told me I would need to be coming to PACU - why the hell not send me THERE to wait in the first place? NO ONE came to talk to me about the MRI results or the results of the spinal tap. And NO ONE told me how to get where I was going in a deserted building.
They offered tissues. Ginger ale. Tea. Sympathy. And got me to Babygirl, who was just waking up, shivering in reaction to the meds. We got back to our room where I let fly at the night resident about the lack of information. About the fact that we STILL haven't seen a neurologist. About the fact that the neurology team scheduled the damned tests and then didn't actually have anything to do with performing those tests. About the fact that I never even for one second met the guy (gal?) who stuck a 6 inch long needle in my kid's back.
The rest of this evening has been trying. Babygirl has just now drifted off to sleep after a lot of pain, chills, and tears. Thankfully we had picked up a collection of Madeline books in the hospital library, and reading about Paris, and the soothing language of the stories helped calm her down and rest her. I didn't need the book. I have most of them memorized.
"In an old house in Paris that was covered in vines,
Lived twelve little girls in two straight lines.....
The smallest one was Madeline."
I suspect it will be a long night. And somewhere along the way I misplaced my iPod.
DeeDee
Week Eighty-four - Riding the Coaster....
Waking up in a hospital shouldn't feel so normal. And it shouldn't feel reassuring, but it does. This past month has taken so much out of me, Hubby, and Babygirl that it almost can't be described.
Babygirl awoke looking fairly well, headache mild, alert and conversational. She ordered breakfast and ate some of it (which may have been an error - she has procedures this afternoon and was supposed to be restricted to clear liquids), the first meal since soup and sandwiches Wednesday evening (most of which ended up on my sister-in-law's floor anyway).
Within an hour the headache was back full force. The nurse got to see the transformation of Babygirl from happy teen to a child huddled under blankets to escape the light. By the time the resident arrived, it was as if the Babygirl I love and miss so much had simply disappeared. It gives me hope when she reappears. It makes me weep when she leaves. It's a roller coaster with 360 degree loops and an unstable track.
I don't know what to pray for. I don't want them to find anything more wrong with her. Or maybe I do - something that makes everybody say, "Oh, of COURSE! And all we have to do to fix this is (pick any simple safe procedure or medication) and she'll be ALL better!"
They took three urine specimens this morning to look for viruses I've never heard of. They did the same sort of thing when they drew her blood. They'll do more zebra and hippo hunting when they do her spinal tap.
Fundamentally speaking, I'm a control freak. I freely admit it, and my family will happily (perhaps even gleefully) give you examples to support this. There is nothing here I can control. Nothing to hang onto, no strings to pull. For all of that, I'm glad we are here. But this coaster has no safety features at ALL.
DeeDee
Babygirl awoke looking fairly well, headache mild, alert and conversational. She ordered breakfast and ate some of it (which may have been an error - she has procedures this afternoon and was supposed to be restricted to clear liquids), the first meal since soup and sandwiches Wednesday evening (most of which ended up on my sister-in-law's floor anyway).
Within an hour the headache was back full force. The nurse got to see the transformation of Babygirl from happy teen to a child huddled under blankets to escape the light. By the time the resident arrived, it was as if the Babygirl I love and miss so much had simply disappeared. It gives me hope when she reappears. It makes me weep when she leaves. It's a roller coaster with 360 degree loops and an unstable track.
I don't know what to pray for. I don't want them to find anything more wrong with her. Or maybe I do - something that makes everybody say, "Oh, of COURSE! And all we have to do to fix this is (pick any simple safe procedure or medication) and she'll be ALL better!"
They took three urine specimens this morning to look for viruses I've never heard of. They did the same sort of thing when they drew her blood. They'll do more zebra and hippo hunting when they do her spinal tap.
Fundamentally speaking, I'm a control freak. I freely admit it, and my family will happily (perhaps even gleefully) give you examples to support this. There is nothing here I can control. Nothing to hang onto, no strings to pull. For all of that, I'm glad we are here. But this coaster has no safety features at ALL.
DeeDee
Thursday, November 29, 2012
Hard Days Night.....
It is now 8 PM on a day that started yesterday at 5 AM. I figure I've catnapped a total of about 90 minutes. But we've accomplished quite a bit.
We saw two different ER doctors twice each, one floor resident 4 times, two nephrologists twice, two infectious disease specialists, two anaesthesiologists, and two ophthalmologists. Counting any visit from any one doctor as being complete if we don't see them again for another two hours, we've had eighteen different doctor visits today. (You'll notice that neurology is missing from this list. We didn't see them, but every one of the above folks put in a call to them for advice so they've earned their money today anyway.) The last time the nephrologist showed up she asked Babygirl, "What is bothering you?" Without looking up from my book, I replied for her: "Doctors."
Babygirl feels like crap. She still has fevers that come and go, mostly low grade, chills, headache and photophobia. Imagine having a crashing headache, having some lunatic put drops in your eyes and then make you stare at bright, bright lights - over and over again. At one point the ophthalmologist could see she was suffering, stopped and said, "Let me give you a break." She shut the lights off, waited for Babygirl to compose herself, and then finished. I can't tell you how proud I am of how little time it took for her to say, "I'm ready."
Ophtho says her eyes are fine and not contributing to the problem in any way. This crosses a couple of (admittedly unlikely) things off the list, and makes some of the other things less likely. Anaesthesia is going to use propophil (not sure on spelling and to tired to care). It's a white liquid sometimes referred to as "Milk of Amnesia" that knocks you but is quickly reversible. Unless your doctor is a total quack and leaves you unsupervised at home with it, as with Michael Jackson, it's pretty safe. Nephrology is worried about the effects of the antibiotics on her kidney, but are afraid to stop them because her blood pressure is low and her pulse high (both improving slowly), both signs of systemic infection. Infectious disease wants a bajillion tests, both on blood and spinal fluid, many of which will take a long time to produce information, and all involving scary rare stuff.
We are moving forward. Once again we might end up not knowing what caused this infection, whether or not it is connected to the headaches, and what to do about them. But I was asked more intelligent, thoughtful questions today about Babygirl's history, our family life, pets and travel habits than I have EVER been asked.
And remember that social assessment form? The one the nurses admit they never look at? I mentioned our pet pygmy hippo on one of them. I doubt anyone will notice.
I'm hoping we'll get some sleep. Thank God I noticed that they'd called in the respiratory therapists. I fired them immediately - we do NOT need someone waking Babygirl every 4 hours to check on the asthma that hasn't require treatment in two years.
DeeDee
We saw two different ER doctors twice each, one floor resident 4 times, two nephrologists twice, two infectious disease specialists, two anaesthesiologists, and two ophthalmologists. Counting any visit from any one doctor as being complete if we don't see them again for another two hours, we've had eighteen different doctor visits today. (You'll notice that neurology is missing from this list. We didn't see them, but every one of the above folks put in a call to them for advice so they've earned their money today anyway.) The last time the nephrologist showed up she asked Babygirl, "What is bothering you?" Without looking up from my book, I replied for her: "Doctors."
Babygirl feels like crap. She still has fevers that come and go, mostly low grade, chills, headache and photophobia. Imagine having a crashing headache, having some lunatic put drops in your eyes and then make you stare at bright, bright lights - over and over again. At one point the ophthalmologist could see she was suffering, stopped and said, "Let me give you a break." She shut the lights off, waited for Babygirl to compose herself, and then finished. I can't tell you how proud I am of how little time it took for her to say, "I'm ready."
Ophtho says her eyes are fine and not contributing to the problem in any way. This crosses a couple of (admittedly unlikely) things off the list, and makes some of the other things less likely. Anaesthesia is going to use propophil (not sure on spelling and to tired to care). It's a white liquid sometimes referred to as "Milk of Amnesia" that knocks you but is quickly reversible. Unless your doctor is a total quack and leaves you unsupervised at home with it, as with Michael Jackson, it's pretty safe. Nephrology is worried about the effects of the antibiotics on her kidney, but are afraid to stop them because her blood pressure is low and her pulse high (both improving slowly), both signs of systemic infection. Infectious disease wants a bajillion tests, both on blood and spinal fluid, many of which will take a long time to produce information, and all involving scary rare stuff.
We are moving forward. Once again we might end up not knowing what caused this infection, whether or not it is connected to the headaches, and what to do about them. But I was asked more intelligent, thoughtful questions today about Babygirl's history, our family life, pets and travel habits than I have EVER been asked.
And remember that social assessment form? The one the nurses admit they never look at? I mentioned our pet pygmy hippo on one of them. I doubt anyone will notice.
I'm hoping we'll get some sleep. Thank God I noticed that they'd called in the respiratory therapists. I fired them immediately - we do NOT need someone waking Babygirl every 4 hours to check on the asthma that hasn't require treatment in two years.
DeeDee
Fever and Toxic Waste......
Yesterday after work I ran home to discover that life had become a bit of a three-ring circus. My mom, contrary to plan, wanted me to come and pick her up. JuJuBee and Boo were there, hanging out with Babygirl. The tutor had just left, and Hubby was heating up soup and trying to organize grilled cheese sandwiches. I hadn't packed yet.
I sent Hubby to get mom, set JuJuBee to making grilled cheese, Babygirl to Boo-minding and table setting. I ran off to fold laundry, sort my meds, and pack. We all came together at the dinner table at about the same time, so it was a good distribution of work to workers.
We arrived in Philly last night without incident. I dropped my mom off at my brother's house and went on to my sister-in-law's, arriving around 10:30. Babygirl had slept much of the way down, and at 11 complained of headache and nausea. I gave her tylenol and told her to go to bed.
After I'd spent some time catching up with my sister-in-law, hearing about Grampa Mike's final days and funeral, I went to bed and discovered Babygirl awake, and shaking like a leaf. I took her temperature through her chattering teeth - 99.3.
I frankly hate it when patients claim '99' to be a 'fever' because they are usually '96.' But Babygirl usually IS 96, to the point where I was beginning to feel that the thermometer might not be accurate. And she had just taken tylenol an hour earlier. But it was the fact that the chill lasted nearly half an hour after that that made me call the doctor on call.
The response was as expected - the temp's not that high, keep an eye on her, call if it gets worse.
An hour later, it did. I awoke from a doze to the sound of gagging and escaped the bed just as Babygirl tossed a grilled cheese sandwich and a bowl of chicken soup (along with about a gallon of some OTHER fluid) onto my sis-in-law's bedroom floor. The stench was awe-inspiring.
Let me tell you that it doesn't matter what I do for a living. I am not good at snot and vomit. It's all I can do not to join in and add to the problem, and I suspect it's why God sent me kids who rarely vomit. But I'm the parent, Hubby was at home (lucky dog), and I've got a clearly very ill little girl and a HUGE, noxious puddle of toxic waste to deal with.
Her temp at that point was 100.6 - not high but over the official 100.4 fever definition. I cleaned up, called the on-call doctor back, stuffed our contaminated belongings in plastic, our suitcases in the van, rinsed parts of Babygirl's hair (ewwwww) and made off for the hospital. At 2:30 AM the 45-90 minutes at rush hour trip took 29 minutes.
At the ER her temp hit 103.6. They've given her the major antibiotics and fluids, chatted with neurology about whether they wanted to do the spinal tap before they gave them, spoken with infectious disease, pharmacy, and nephrology.
We are being moved to the floor soon, none the wiser about why she got so sick so suddenly (especially since she's barely left the house in a month) but well taken care of.
I guess we're going to miss our transplant team appointment at 9:30. But that's okay. We already know the kidney is fine.
DeeDee
I sent Hubby to get mom, set JuJuBee to making grilled cheese, Babygirl to Boo-minding and table setting. I ran off to fold laundry, sort my meds, and pack. We all came together at the dinner table at about the same time, so it was a good distribution of work to workers.
We arrived in Philly last night without incident. I dropped my mom off at my brother's house and went on to my sister-in-law's, arriving around 10:30. Babygirl had slept much of the way down, and at 11 complained of headache and nausea. I gave her tylenol and told her to go to bed.
After I'd spent some time catching up with my sister-in-law, hearing about Grampa Mike's final days and funeral, I went to bed and discovered Babygirl awake, and shaking like a leaf. I took her temperature through her chattering teeth - 99.3.
I frankly hate it when patients claim '99' to be a 'fever' because they are usually '96.' But Babygirl usually IS 96, to the point where I was beginning to feel that the thermometer might not be accurate. And she had just taken tylenol an hour earlier. But it was the fact that the chill lasted nearly half an hour after that that made me call the doctor on call.
The response was as expected - the temp's not that high, keep an eye on her, call if it gets worse.
An hour later, it did. I awoke from a doze to the sound of gagging and escaped the bed just as Babygirl tossed a grilled cheese sandwich and a bowl of chicken soup (along with about a gallon of some OTHER fluid) onto my sis-in-law's bedroom floor. The stench was awe-inspiring.
Let me tell you that it doesn't matter what I do for a living. I am not good at snot and vomit. It's all I can do not to join in and add to the problem, and I suspect it's why God sent me kids who rarely vomit. But I'm the parent, Hubby was at home (lucky dog), and I've got a clearly very ill little girl and a HUGE, noxious puddle of toxic waste to deal with.
Her temp at that point was 100.6 - not high but over the official 100.4 fever definition. I cleaned up, called the on-call doctor back, stuffed our contaminated belongings in plastic, our suitcases in the van, rinsed parts of Babygirl's hair (ewwwww) and made off for the hospital. At 2:30 AM the 45-90 minutes at rush hour trip took 29 minutes.
At the ER her temp hit 103.6. They've given her the major antibiotics and fluids, chatted with neurology about whether they wanted to do the spinal tap before they gave them, spoken with infectious disease, pharmacy, and nephrology.
We are being moved to the floor soon, none the wiser about why she got so sick so suddenly (especially since she's barely left the house in a month) but well taken care of.
I guess we're going to miss our transplant team appointment at 9:30. But that's okay. We already know the kidney is fine.
DeeDee
Monday, November 26, 2012
How Can You Know....
How can you know for sure that your child isn't avoiding school? The sunglasses were back on this morning, and she complained again of neck pain. Don't get me wrong - she had a headache on Sunday, but it wasn't so bad that she needed the glasses, and she went to church. She didn't appear to me to avoid the family gatherings, but she complains that school is 'too noisy.' She rarely wakes up with a severe headache on a Saturday, or maybe she does and just takes her meds and goes back to sleep so I don't notice.
Certainly when the headaches started there wasn't a doubt in my mind that they were all totally legitimate. There were too many odd complaints, and she looked terrible. Heck, last WEEK she looked terrible.
I don't know what it was about this morning that made me wonder. There was a lack of the emotional intensity, perhaps. But maybe it was apathy. Maybe it was denial.
Maybe what I am hoping for in the back of my mind is that it's all fake, and therefore there is nothing at all serious to worry about. As the countdown to testing continues, my anxiety is a noticeable presence in my life. There's a big part of me that really doesn't want to know what is wrong. If we don't do the tests, we can keep calling this migraine and not worry about it, right? And if she's pretending, I can just get her a counselor and shove her out the door to school every day.
But I've had to stop using my favorite lotion because the smell makes her head hurt. And she won't chew her favorite gum because the smell of spearmint makes her head hurt. It's only those two smells. Who makes up stuff like that?
DeeDee
Certainly when the headaches started there wasn't a doubt in my mind that they were all totally legitimate. There were too many odd complaints, and she looked terrible. Heck, last WEEK she looked terrible.
I don't know what it was about this morning that made me wonder. There was a lack of the emotional intensity, perhaps. But maybe it was apathy. Maybe it was denial.
Maybe what I am hoping for in the back of my mind is that it's all fake, and therefore there is nothing at all serious to worry about. As the countdown to testing continues, my anxiety is a noticeable presence in my life. There's a big part of me that really doesn't want to know what is wrong. If we don't do the tests, we can keep calling this migraine and not worry about it, right? And if she's pretending, I can just get her a counselor and shove her out the door to school every day.
But I've had to stop using my favorite lotion because the smell makes her head hurt. And she won't chew her favorite gum because the smell of spearmint makes her head hurt. It's only those two smells. Who makes up stuff like that?
DeeDee
When Crises Collide.....
A little over a year ago, I wrote about possible conflicts between Babygirl's needs and those of other family members (http://kidneedsakidney.blogspot.com/2011/11/week-thirty-conflicting-obligations.html). That potential conflict worked out fine. Curlygirl's Squeaker was born almost a month after Babygirl's kidney transplant, so I had no need to prioritize one child over another.
Life moves on, and we've had to do more than a little juggling to meet everyone's various needs. Overall, we are successful. This week, not so much.
Last week Grampa Mike died. He was an amazing man (http://stei-23890.tributes.com/show/Francis-M.-Brick-94772126), and despite the fact that he was not actually related to us by blood, he was Grampa to my kids. I was able to visit him in the hospital last month, and did what I could to support my niece and nephew and my sister-in-law during the long weeks of his illness. He was able to die at home, surrounded by family. I will miss him.
Babygirl has to be in Philadelphia Thursday and Friday, so the plan was to travel down Wednesday evening. But now there is a funeral Tuesday, tomorrow, and it is the one day of this week when we cannot possibly go. Babygirl's routine dental visit has been delayed four times due to hospitalizations and low white cell counts. Because of the transplant it is important for her not to develop any infections, and regular cleanings are important for her. I'm more or less in the same boat, and have an appointment as well. Her parent-teacher conference is tomorrow, between our two appointments, and I MUST keep up on school information. To top it off, my Mom has a doctor's appointment as well.
My sister-in-law understands. But I want to be there, for her, her siblings, and for my neice and nephew. I want to honor Grampa Mike's life with the rest of them, and hear stories shared that I'll never have the opportunity to hear otherwise, and celebrate the man he was.
If ever there was a time that I wish I could manage being in two places at once, this would be it.
DeeDee
Life moves on, and we've had to do more than a little juggling to meet everyone's various needs. Overall, we are successful. This week, not so much.
Last week Grampa Mike died. He was an amazing man (http://stei-23890.tributes.com/show/Francis-M.-Brick-94772126), and despite the fact that he was not actually related to us by blood, he was Grampa to my kids. I was able to visit him in the hospital last month, and did what I could to support my niece and nephew and my sister-in-law during the long weeks of his illness. He was able to die at home, surrounded by family. I will miss him.
Babygirl has to be in Philadelphia Thursday and Friday, so the plan was to travel down Wednesday evening. But now there is a funeral Tuesday, tomorrow, and it is the one day of this week when we cannot possibly go. Babygirl's routine dental visit has been delayed four times due to hospitalizations and low white cell counts. Because of the transplant it is important for her not to develop any infections, and regular cleanings are important for her. I'm more or less in the same boat, and have an appointment as well. Her parent-teacher conference is tomorrow, between our two appointments, and I MUST keep up on school information. To top it off, my Mom has a doctor's appointment as well.
My sister-in-law understands. But I want to be there, for her, her siblings, and for my neice and nephew. I want to honor Grampa Mike's life with the rest of them, and hear stories shared that I'll never have the opportunity to hear otherwise, and celebrate the man he was.
If ever there was a time that I wish I could manage being in two places at once, this would be it.
DeeDee
Sunday, November 25, 2012
School Pictures......
One of the many problems with not attending more than one day of school a week is that you miss school portrait day. Admittedly school 'portraits' are not usually particularly representative of our children's growth and beauty as WE see it, but it's still nice to have something current to send to the family at Christmas.
Babygirl left school early on picture day. She missed school entirely on photo makeup day. This year, for the first time ever we won't have a set of school photos of her. She hates having her picture taken anyway - her body has changed so much in the last ten months due to the anti-rejection medications that she's become uncomfortable about it.
But the beauty of having family is that people have talents that I lack and are willing to share them. So my thanks and undying admiration go to my (local) sister-in-law. She is a photographer of rare talent: landscapes, portraits, animals, weddings, babies - she rocks them all. And she took pictures of Babygirl that will allow her to see just how beautiful she really is. This is the preview shot:
Impressive.
DeeDee
Babygirl left school early on picture day. She missed school entirely on photo makeup day. This year, for the first time ever we won't have a set of school photos of her. She hates having her picture taken anyway - her body has changed so much in the last ten months due to the anti-rejection medications that she's become uncomfortable about it.
But the beauty of having family is that people have talents that I lack and are willing to share them. So my thanks and undying admiration go to my (local) sister-in-law. She is a photographer of rare talent: landscapes, portraits, animals, weddings, babies - she rocks them all. And she took pictures of Babygirl that will allow her to see just how beautiful she really is. This is the preview shot:
Impressive.
DeeDee
Saturday, November 24, 2012
The Aftermath....
Nineteen people, including the babies, sat down for Thanksgiving dinner at my house. We can seat ten luxuriously at our dinner table. Twelve can eat in comfort. Fourteen might be okay if we were a family of, um, smaller proportions, but we are big people of German extraction and we like our space.
Each year we try to reconfigure things. We've tried a kids' table (they hated it). We've stretched tables through doorways into a second room (it works but no one in the other room can leave that room until dinner is over. The weak bladdered among us must choose wisely). This year we removed the coffee table, put a piece of plywood on sawhorses in the living room, added tablecloths and voila! We had seating. We called it the 'young families' table. All the young couples with babies fit there without difficulty, and Babygirl decided to add herself to that table. That left the older families (with one nine year old) at the other table. There was a clear line of vision from one table to the other, they physical separation being about four feet.
Socially, it was an unqualified success. And we had one chair to spare.
Last night was Leftover Night. I put most of the leftovers into crock pots to heat, and the rest into the oven. It's a very low-stress meal. I baked the two extra pumpkin pies, and at Babygirl's request, made some apple crisp. All the deserts went on the table, and the rest were in the kitchen to be served buffet style. Everyone who arrived early started with desert LOL! We had ten people happy and fed, and spent the evening playing games and music.
Fitted in between, and for much of this morning, was the cleanup. You can't have sixteen extra people in your house without creating a spectacular amount of trash, dust and dirt. I haven't been killing myself, but I've still put a significant amount of time into the cleanup, as well as the usual household chores.
So for the rest of today, it's about me. I'm going to get a pedicure, shop in my favorite store, and relax. Don't look for me. I have no interest in being found.
DeeDee
Each year we try to reconfigure things. We've tried a kids' table (they hated it). We've stretched tables through doorways into a second room (it works but no one in the other room can leave that room until dinner is over. The weak bladdered among us must choose wisely). This year we removed the coffee table, put a piece of plywood on sawhorses in the living room, added tablecloths and voila! We had seating. We called it the 'young families' table. All the young couples with babies fit there without difficulty, and Babygirl decided to add herself to that table. That left the older families (with one nine year old) at the other table. There was a clear line of vision from one table to the other, they physical separation being about four feet.
Socially, it was an unqualified success. And we had one chair to spare.
Last night was Leftover Night. I put most of the leftovers into crock pots to heat, and the rest into the oven. It's a very low-stress meal. I baked the two extra pumpkin pies, and at Babygirl's request, made some apple crisp. All the deserts went on the table, and the rest were in the kitchen to be served buffet style. Everyone who arrived early started with desert LOL! We had ten people happy and fed, and spent the evening playing games and music.
Fitted in between, and for much of this morning, was the cleanup. You can't have sixteen extra people in your house without creating a spectacular amount of trash, dust and dirt. I haven't been killing myself, but I've still put a significant amount of time into the cleanup, as well as the usual household chores.
So for the rest of today, it's about me. I'm going to get a pedicure, shop in my favorite store, and relax. Don't look for me. I have no interest in being found.
DeeDee
Friday, November 23, 2012
The Headache Break....
Babygirl awoke Thanksgiving morning with a headache. It wasn't as severe as most of her morning headaches have been, and it didn't make her draw the 'black X of doom' on her headache calendar, but it was there. Through the day she soldiered on, doing whatever tasks needed to be done. But by dinnertime I noticed a change. Her posture improved, her mood lifted, and she joined in the dinnertime banter and laughed - LAUGHED - without clutching her head in pain.
After dinner as we were doing some cleanup, she looked at me and said, "This is the first time my head hasn't hurt in more than two weeks." She was doing so well I let her go with Citygirl to see "Breaking Dawn part 2," a movie she's been looking forward to since meeting "Emily" and "Sam" at CHOP immediately after her transplant. I was asleep when she came home, but she awoke headache free, and remained so until after dinner, when she started anew headache and took some Tylenol.
No headache for a total of about 26 hours. It was like a miracle.
Seven more days until the neurology testing. Our insurance has authorised it.
DeeDee
After dinner as we were doing some cleanup, she looked at me and said, "This is the first time my head hasn't hurt in more than two weeks." She was doing so well I let her go with Citygirl to see "Breaking Dawn part 2," a movie she's been looking forward to since meeting "Emily" and "Sam" at CHOP immediately after her transplant. I was asleep when she came home, but she awoke headache free, and remained so until after dinner, when she started anew headache and took some Tylenol.
No headache for a total of about 26 hours. It was like a miracle.
Seven more days until the neurology testing. Our insurance has authorised it.
DeeDee
Thursday, November 22, 2012
Week Eighty-three - All You Need is Pie.....
I love Thanksgiving. Sure, there's some work involved, but you can do most of it in your pajamas (one of our foster kids used to call them "pajanamas"). Citygirl is here, so Babygirl has somebody to hang out with, which has cheered her up amazingly. Which, it goes without saying, cheers me as well.
There are many things I love about Thanksgiving. Family moments, the sharing of gratitude, good food and the general atmosphere of low-stress happiness. And why is everybody happy? Pie.
All you really ever need to make somebody happy is pie. Think about it. Is it possible to be totally miserable when the air is full of the smell of cooking apples and cinnamon? Add the clove-and-ginger scent of a good pumpkin pie, the sight of meringue, the rich color of blueberries. How can anyone resist a smile? Put some real whipped cream on top of that - wow.
Yes, I know that the smell of roasting turkey is amazing. I know that good stuffing covered in gravy is SO good when it crowds in next to a sweet potato casserole. But we all know that the whole time we are eating all that deliciousness, we are still looking forward to pie.
So when I accidentally doubled the pumpkin pie filling recipe and discovered I had enough for FOUR instead of two, making it possible for me to make two fresh pies for leftover night? It was like an extra helping of free happiness.
So happy Thanksgiving to all my friends and family. I wish you peace, gratitude, good health - and pie.
DeeDee
There are many things I love about Thanksgiving. Family moments, the sharing of gratitude, good food and the general atmosphere of low-stress happiness. And why is everybody happy? Pie.
All you really ever need to make somebody happy is pie. Think about it. Is it possible to be totally miserable when the air is full of the smell of cooking apples and cinnamon? Add the clove-and-ginger scent of a good pumpkin pie, the sight of meringue, the rich color of blueberries. How can anyone resist a smile? Put some real whipped cream on top of that - wow.
Yes, I know that the smell of roasting turkey is amazing. I know that good stuffing covered in gravy is SO good when it crowds in next to a sweet potato casserole. But we all know that the whole time we are eating all that deliciousness, we are still looking forward to pie.
So when I accidentally doubled the pumpkin pie filling recipe and discovered I had enough for FOUR instead of two, making it possible for me to make two fresh pies for leftover night? It was like an extra helping of free happiness.
So happy Thanksgiving to all my friends and family. I wish you peace, gratitude, good health - and pie.
DeeDee
Wednesday, November 21, 2012
The Value of a Smile....
Babygirl came down this morning without sunglasses, and gave me a hug and a smile. Her head still hurts, it always does these days, but it was to a tolerable level. There was no need to put the big black X on the headache calendar we are keeping for the neurologist.
I haven't seen that smile in two weeks.
I'm grateful.
DeeDee
I haven't seen that smile in two weeks.
I'm grateful.
DeeDee
Tuesday, November 20, 2012
Weeping......
I raise girls. Crying, tantrums and emotional storms are a part of the landscape. Girls in their teens are by nature living on the brink of constant hysteria, be it of the happy kind (OhMerGerrrddd he LOOKED at me!!) to the angry kind (OhMerGerrddd SHE looked at HIM!) to the my-life-is-over kind (fill in the blank here with any and all imaginable apparently irreversible crises). The feelings are real, and the intensity frightening, however laughable the circumstances appear to the long-suffering adult helping them deal with the crisis du jour. But in my experience, girls thirteen and up tend to keep their true sadness to themselves. They share some of it with peers, and display symptoms of it to their parents, but the real crying occurs in the lonely privacy of their rooms, in the dark of night, alone. I know this. I was a girl once.
So when a girl cries in front of me, I take it seriously. Be it tears of rage and frustration or pure grief, my girls have gifted me with the privelege of holding on - holding them up, holding them back, holding their hearts. From skinned knees to baby blues, tears matter, and my job is to be there when they let me.
Babygirl came downstairs this morning, wearing (the G-d freaking I HATE them) sunglasses. I was focused on household budget, paying bills, writing checks, a letter to one of our Compassion kids, the usual. But there was something about the set of her shoulders that caught my attention. Slumped. Sad. Hopeless. Even without being able to see her eyes, I knew she had descended to some place that needed rescue.
Paperwork be damned. I pulled her to a couch and just held her. We cried together for amost fifteen minutes, letting out fear, rage, and sheer discouragement. She said absolutely nothing. And then she went back to bed.
Lord, please. Please.
DeeDee
So when a girl cries in front of me, I take it seriously. Be it tears of rage and frustration or pure grief, my girls have gifted me with the privelege of holding on - holding them up, holding them back, holding their hearts. From skinned knees to baby blues, tears matter, and my job is to be there when they let me.
Babygirl came downstairs this morning, wearing (the G-d freaking I HATE them) sunglasses. I was focused on household budget, paying bills, writing checks, a letter to one of our Compassion kids, the usual. But there was something about the set of her shoulders that caught my attention. Slumped. Sad. Hopeless. Even without being able to see her eyes, I knew she had descended to some place that needed rescue.
Paperwork be damned. I pulled her to a couch and just held her. We cried together for amost fifteen minutes, letting out fear, rage, and sheer discouragement. She said absolutely nothing. And then she went back to bed.
Lord, please. Please.
DeeDee
Monday, November 19, 2012
Never the Same One.....
We work hard not to repeat mistakes. It gives us so many opportunities to make new ones.
Babygirl's Cellcept is now in a liquid. Two months ago I had to run to a pharmacy 70 miles away to get this new prescription, and it must be discarded 60 days after it is reconstituted from powder to liquid. So I planned WAY ahead this time. Several weeks ago I asked for an actual written prescription for it, so it wouldn't get faxed to a pharmacy, ordered and reconstituted before we need it - one bottle costs about two grand and could last 70 days if we didn't have to toss the rest. I took the prescription to the pharmacy so they could order it and got them to swear they wouldn't add the water until the day we picked it up. I put the date on my calendar to call and ask them to ready the script.
And I forgot to call.
No worries, really. Sixty versus sixty-one? What are the odds that something terrible will happen anyway? I called a day late and told Hubby to make sure to pick it the next day, which happened to be Friday.
Hubby took this very seriously. He was the first one in the pharmacy when it opened, picked up the Cellcept and brought it home. But when I sat down that evening to put it into the syringes, I discovered when I shook it that I had a bottle of dry powder.
I must admit I got a bit loud. But Babygirl will confirm that I didn't actually use any bad words.
Our pharmacy closes at six on Fridays. It was nearly seven when I made this discovery. And our pharmacy doesn't open until Monday morning at nine. I didn't have any sterile water to add myself, and I had nothing I could accurately measure 175 cc's of water in anyway. I needed six more doses of medication. Thank God that a bottle COULD last 70 days!
Not that I was utterly without options. I still have the pills, but they are 250 mg. and she is supposed to take 160.
Hubby went back to the pharmacy this morning. I failed to ask him what they had to say about their failure to add water, or what he said to them. I'm not sure I want to know.
DeeDee
Babygirl's Cellcept is now in a liquid. Two months ago I had to run to a pharmacy 70 miles away to get this new prescription, and it must be discarded 60 days after it is reconstituted from powder to liquid. So I planned WAY ahead this time. Several weeks ago I asked for an actual written prescription for it, so it wouldn't get faxed to a pharmacy, ordered and reconstituted before we need it - one bottle costs about two grand and could last 70 days if we didn't have to toss the rest. I took the prescription to the pharmacy so they could order it and got them to swear they wouldn't add the water until the day we picked it up. I put the date on my calendar to call and ask them to ready the script.
And I forgot to call.
No worries, really. Sixty versus sixty-one? What are the odds that something terrible will happen anyway? I called a day late and told Hubby to make sure to pick it the next day, which happened to be Friday.
Hubby took this very seriously. He was the first one in the pharmacy when it opened, picked up the Cellcept and brought it home. But when I sat down that evening to put it into the syringes, I discovered when I shook it that I had a bottle of dry powder.
I must admit I got a bit loud. But Babygirl will confirm that I didn't actually use any bad words.
Our pharmacy closes at six on Fridays. It was nearly seven when I made this discovery. And our pharmacy doesn't open until Monday morning at nine. I didn't have any sterile water to add myself, and I had nothing I could accurately measure 175 cc's of water in anyway. I needed six more doses of medication. Thank God that a bottle COULD last 70 days!
Not that I was utterly without options. I still have the pills, but they are 250 mg. and she is supposed to take 160.
Hubby went back to the pharmacy this morning. I failed to ask him what they had to say about their failure to add water, or what he said to them. I'm not sure I want to know.
DeeDee
Sunday, November 18, 2012
Giving Thanks.....
The weekend before Thanksgiving has its own concerns, unique to itself. How many people are coming? Do we have enough chairs? Who is bringing what, and when are we going to sit down and eat?
I think we have only fourteen this year, but I am notoriously unable to count. No matter that we count twice, and then a third time, and then set the table with one extra place setting, we are always one short. I have no idea at all why, or how that's even possible, but it happens every single year.
Our guests range in age from under one to over 90. There is always homemade music, homemade cranberry sauce, and homemade pie. There are usually two turkeys (one smoked and one roasted) and one ham (Curlygirl HATES turkey). Dinner begins with a round of thankfulness, each of us telling what we are most thankful for.
One memorable Thanksgiving my Aunt Mary (rest her soul) silenced the room by declaring that there wasn't one single thing she was thankful for! In rebuttal, we now have a sign hanging in the dining room that says, "There is always, always, ALWAYS something to be thankful for!"
When I began contemplating what I am thankful for I had an 'Aunt Mary' moment. After all, Babygirl is suffering daily and we don't know why. And I have nothing to offer her to make it better - nothing at all! My level of frustration with this is intensely high.
But this intense level of frustration should in no way make me so ungrateful.
So here is the start of list of things I am grateful for:
Babygirl has a kidney that works, and isn't on dialysis anymore.
Financially we are much more stable than we were at this time last year.
My family is wonderful, supportive and generous.
(My family includes a large number of people I'm not even related to!)
I have a home, food, clothes, and a job.
I live in a great neighborhood, with great neighbors.
I love turkey, and I'm going to get to eat it for a week.
Eleven more days until the neurology workup. I'm grateful that it's scheduled.
DeeDee
I think we have only fourteen this year, but I am notoriously unable to count. No matter that we count twice, and then a third time, and then set the table with one extra place setting, we are always one short. I have no idea at all why, or how that's even possible, but it happens every single year.
Our guests range in age from under one to over 90. There is always homemade music, homemade cranberry sauce, and homemade pie. There are usually two turkeys (one smoked and one roasted) and one ham (Curlygirl HATES turkey). Dinner begins with a round of thankfulness, each of us telling what we are most thankful for.
One memorable Thanksgiving my Aunt Mary (rest her soul) silenced the room by declaring that there wasn't one single thing she was thankful for! In rebuttal, we now have a sign hanging in the dining room that says, "There is always, always, ALWAYS something to be thankful for!"
When I began contemplating what I am thankful for I had an 'Aunt Mary' moment. After all, Babygirl is suffering daily and we don't know why. And I have nothing to offer her to make it better - nothing at all! My level of frustration with this is intensely high.
But this intense level of frustration should in no way make me so ungrateful.
So here is the start of list of things I am grateful for:
Babygirl has a kidney that works, and isn't on dialysis anymore.
Financially we are much more stable than we were at this time last year.
My family is wonderful, supportive and generous.
(My family includes a large number of people I'm not even related to!)
I have a home, food, clothes, and a job.
I live in a great neighborhood, with great neighbors.
I love turkey, and I'm going to get to eat it for a week.
Eleven more days until the neurology workup. I'm grateful that it's scheduled.
DeeDee
Friday, November 16, 2012
Week Eighty-two - Thirteen More......
The holidays are coming. Ordinarily, I'm a holdiay kind of gal. I look forward to decorating, feeding people, opening my home. I love the music, the optimism, the sparkle. I love the intense competition that is Black Friday.
But I'm tired. Babygirl's pain and sadness have colored my world to a fatiguing shade of grey. I keep putting one foot in front of the other, and I encourage her to do likewise. I cradle her in my arms and let her cry. I keep her medications up-to-date and make sure she understands what she can do to help keep the headaches at bay. I've bought alternatives to the food she loves but cannot have right now.
Last night we watched the new episode of Glee. It's her favorite show, and the only one I allow her to stay up late to watch. There were sad scenes, and there were funny scenes. In one moment we were both laughing out loud, and in the next she was clutching her head and saying that laughing made her head hurt more.
That was about the most depressing thing I've ever heard.
Thirteen. More. Days.
DeeDee
But I'm tired. Babygirl's pain and sadness have colored my world to a fatiguing shade of grey. I keep putting one foot in front of the other, and I encourage her to do likewise. I cradle her in my arms and let her cry. I keep her medications up-to-date and make sure she understands what she can do to help keep the headaches at bay. I've bought alternatives to the food she loves but cannot have right now.
Last night we watched the new episode of Glee. It's her favorite show, and the only one I allow her to stay up late to watch. There were sad scenes, and there were funny scenes. In one moment we were both laughing out loud, and in the next she was clutching her head and saying that laughing made her head hurt more.
That was about the most depressing thing I've ever heard.
Thirteen. More. Days.
DeeDee
Wednesday, November 14, 2012
The New Countdown.....
I got a call from neurology today confirming the 30th as the date for the testing. It was reassuring to hear that the neurologist himself had called his scheduler to make sure things were all set, and that he asked her to check with me to see that things were not deteriorating further. I'm to call immediately if that happens, and I have to say it's nice to hear someone say that they are concerned and paying attention.
Fortunately we do not have to go down for a separate anaesthesia evaluation. She was assessed by the sedation team in August for the biopsy that never happened, so she's up-to-date with them. I'm considering calling nephrology to reschedule our visit for 10 days early to match up with this.
All that's left for me to do is to start a new countdown: 15 more days.
Is there anybody besides me out there who is utterly astonished by the fact that Thanksgiving is a week from tomorrow? I have't bought the turkey that I should start thawing today. I don't know who's coming, haven't sent out the engraved invitations, and haven't gotten any up-front offers to help with the meal.
Ah, well. "Ye have not because ye ask not." Time to get out the engraver.
DeeDee
Fortunately we do not have to go down for a separate anaesthesia evaluation. She was assessed by the sedation team in August for the biopsy that never happened, so she's up-to-date with them. I'm considering calling nephrology to reschedule our visit for 10 days early to match up with this.
All that's left for me to do is to start a new countdown: 15 more days.
Is there anybody besides me out there who is utterly astonished by the fact that Thanksgiving is a week from tomorrow? I have't bought the turkey that I should start thawing today. I don't know who's coming, haven't sent out the engraved invitations, and haven't gotten any up-front offers to help with the meal.
Ah, well. "Ye have not because ye ask not." Time to get out the engraver.
DeeDee
Monday, November 12, 2012
Neurology for $400, Alex.......
We met our neurologist today. I like him. He listened without interrupting, spoke directly to Babygirl when appropriate, and didn't rush to make a final diagnosis without some extra information.
We continue to carry the diagnosis "Headache NOS" ('not otherwise specified' for those of you unfamiliar with medical code terminology). He ordered an MRI of her brain, an MRI of her cervical spine, and (not unexpected but YIKES anyway) a spinal tap. He did not feel that it was emergent, so we came home. No admission today, yippee! I guess packing the extra undies worked.
All of these things, in the absence of an emergency, require prior authorization from our insurance. Who knows how long that will take, but it was less than a week for them to authorize her kidney transplant (and months to get it as we all know!). Once authorized, they plan to schedule them all for one day.
Each MRI takes a full hour and requires that she lay perfectly still the entire time. And the spinal tap? On an adult it's a procedure under local anaesthesia. For a kid, sedation is advisable. Frankly I think she'd be able to handle the tap more easily than the MRIs.
Before I even arrived home I had a phone call from the sedation team nurse. She had the office notes from today's visits, and also the sedation records from Babygirl's kidney biopsy last May ("This is odd - they say she's VERY ticklish." Um...yeah.). It was her opinion that Babygirl's weight gain and increasing body mass index put her at risk for unsupervised sedation in an MRI machine. She feels her airway could relax enough to allow her to stop breathing, so she is recommending full general anaesthesia so she can be ventilated to protect her airway while she's out. So now the co-ordination is between general anaesthesia, MRI and the spinal tap area (?).
This could take a minute.
Meanwhile, they have given us the Migraine Diet to follow. No chocolate (including hot chocolate or chocolate milk), peanut butter, pizza, cured meat (ham) or Chinese. There's more, but those are the ones that hurt. I won't be able to serve quiche or anything made with aged cheese. Pork is limited, no sausages, hot dogs, cold cuts. Some of these things overlap with the post-transplant diet, but many are things she couldn't have while on dialysis that she's been very happy to have back.
This kid just can't seem to cut a break, but at least they are finally working on it.
DeeDee
We continue to carry the diagnosis "Headache NOS" ('not otherwise specified' for those of you unfamiliar with medical code terminology). He ordered an MRI of her brain, an MRI of her cervical spine, and (not unexpected but YIKES anyway) a spinal tap. He did not feel that it was emergent, so we came home. No admission today, yippee! I guess packing the extra undies worked.
All of these things, in the absence of an emergency, require prior authorization from our insurance. Who knows how long that will take, but it was less than a week for them to authorize her kidney transplant (and months to get it as we all know!). Once authorized, they plan to schedule them all for one day.
Each MRI takes a full hour and requires that she lay perfectly still the entire time. And the spinal tap? On an adult it's a procedure under local anaesthesia. For a kid, sedation is advisable. Frankly I think she'd be able to handle the tap more easily than the MRIs.
Before I even arrived home I had a phone call from the sedation team nurse. She had the office notes from today's visits, and also the sedation records from Babygirl's kidney biopsy last May ("This is odd - they say she's VERY ticklish." Um...yeah.). It was her opinion that Babygirl's weight gain and increasing body mass index put her at risk for unsupervised sedation in an MRI machine. She feels her airway could relax enough to allow her to stop breathing, so she is recommending full general anaesthesia so she can be ventilated to protect her airway while she's out. So now the co-ordination is between general anaesthesia, MRI and the spinal tap area (?).
This could take a minute.
Meanwhile, they have given us the Migraine Diet to follow. No chocolate (including hot chocolate or chocolate milk), peanut butter, pizza, cured meat (ham) or Chinese. There's more, but those are the ones that hurt. I won't be able to serve quiche or anything made with aged cheese. Pork is limited, no sausages, hot dogs, cold cuts. Some of these things overlap with the post-transplant diet, but many are things she couldn't have while on dialysis that she's been very happy to have back.
This kid just can't seem to cut a break, but at least they are finally working on it.
DeeDee
Sunday, November 11, 2012
Expectations....
We've waited an eternity to see the headache specialist. We've arrived safe in Philadelphia, and will travel to the hospital in the morning to meet, as usual, with the transplant team. And we'll finally meet the neurologist. He probably already thinks I'm crazy - we've bugged the living daylights out of him already.
We've pinned a lot of hope on this visit.But walking in and expecting that she will be headache-free instantaneously is clearly unrealistic, however much it would meet my fondest dreams.
But aside from knowing not to expect immediate freedom from headaches, I really have no idea WHAT to expect. MRI? Better neck images? Extra blood work? Admission?
I brought extra undies just in case. I figure if I'm ready to stay a few days they'll be more likely to send us home. It's a karma thing.
DeeDee
We've pinned a lot of hope on this visit.But walking in and expecting that she will be headache-free instantaneously is clearly unrealistic, however much it would meet my fondest dreams.
But aside from knowing not to expect immediate freedom from headaches, I really have no idea WHAT to expect. MRI? Better neck images? Extra blood work? Admission?
I brought extra undies just in case. I figure if I'm ready to stay a few days they'll be more likely to send us home. It's a karma thing.
DeeDee
Friday, November 9, 2012
I Fixed a Roof.....
Each year when we go on Appalachia Service Project mission trip, we plan some sort of song to introduce ourselves to the other groups. We've used tunes from pop, country, and once even the theme from Gilligan's Island. Other teams do the same, and it breaks the ice on the first night when three or four churches from different states are coming together to do home repairs for folks who can't afford to do it themselves.
Last week I got a song stuck in my head (thanks to Babygirl's Glee reruns). But it was a good, rhythmic song to walk to, and while I was walking I started a rewrite for our next mission trip. It's totally silly, and my apologies to Katy Perry.
I Fixed A Roof
This is not what I had planned
(I hate heights, I'm not good at ladders!).
What are these tools here in my hand?
I've never used a drill or a hammer!
It's not what I'm used to
Just had to climb right on
It's curious what I'll do
With the right intentions!
I fixed a roof and I liked it
to keep someone warmer, safer, dryer!
I fixed a roof just to try it
I hope ASP will like it!
It seemed so wrong, and felt so right
I think I'll sleep good tonight.
I fixed roof and I liked it - I liked it!
This mountain fell into their yard
now you give me a post hole digger!
I have never worked so hard
could railroad ties be bigger?
It's not what I'm used to
Just had to pile it on
It's curious what I'll do
With that big sledgehammer!
But I built a wall and I liked it
to keep someone warmer, safer, dryer!
I dug a ditch and I liked it
muddy, sweaty, hot and dehydrated.
It felt so wrong, but it seemed so right
I'm sure I'll sleep great tonight!
I built a wall and I liked it - I liked it!
Mission work is so magical
We help, they know God loves them so!
Hard to resist all those Devos...
I ran out of steam here. I'll post in on the mission team site and take my lumps about the horrible meter and bad rhyme. But it took me outside myself and made me remember our friends in West Virginia. With all the snow from Hurricane Sandy I'm guessing we'll have a lot of roofs to fix.
DeeDee
Last week I got a song stuck in my head (thanks to Babygirl's Glee reruns). But it was a good, rhythmic song to walk to, and while I was walking I started a rewrite for our next mission trip. It's totally silly, and my apologies to Katy Perry.
I Fixed A Roof
This is not what I had planned
(I hate heights, I'm not good at ladders!).
What are these tools here in my hand?
I've never used a drill or a hammer!
It's not what I'm used to
Just had to climb right on
It's curious what I'll do
With the right intentions!
I fixed a roof and I liked it
to keep someone warmer, safer, dryer!
I fixed a roof just to try it
I hope ASP will like it!
It seemed so wrong, and felt so right
I think I'll sleep good tonight.
I fixed roof and I liked it - I liked it!
This mountain fell into their yard
now you give me a post hole digger!
I have never worked so hard
could railroad ties be bigger?
It's not what I'm used to
Just had to pile it on
It's curious what I'll do
With that big sledgehammer!
But I built a wall and I liked it
to keep someone warmer, safer, dryer!
I dug a ditch and I liked it
muddy, sweaty, hot and dehydrated.
It felt so wrong, but it seemed so right
I'm sure I'll sleep great tonight!
I built a wall and I liked it - I liked it!
Mission work is so magical
We help, they know God loves them so!
Hard to resist all those Devos...
I ran out of steam here. I'll post in on the mission team site and take my lumps about the horrible meter and bad rhyme. But it took me outside myself and made me remember our friends in West Virginia. With all the snow from Hurricane Sandy I'm guessing we'll have a lot of roofs to fix.
DeeDee
Thursday, November 8, 2012
Week Eighty-one - Redefining Eternity....
As we continue the countdown to Monday's upcoming visit with the headache specialist, I begin to understand the concept of eternity.
Eternity exists outside of time. My clocks still tick of seconds and minutes, and they are all theoretically of the same length, one compared to another. But think about how time passes while you sleep. There is very little sense of time passing, yet you fall asleep in one day and wake up in another.
This wait is the opposite of that. Watching your child suffer takes you outside of time and into a new, eternal dimension that makes each second expand exponentially into something that touches on forever. Everytime I see those sunglasses, time slows, and slows, and slows. We go through what is now a nearly daily routine - check temperature, check blood pressure, use the one-to-ten pain scale to evaluate neck and head pain. I check for true signs of meningitis DAILY, and sometimes more than three times in a day. It makes me late for work. It makes my heart pause whenever my phone rings. It makes me crazed and fearful. It makes me feel helpless, and alone.
Babygirl and I have more or less reached a point of apathy. We go through the motions, take medications, push fluids and rest. And we wait.
Four more days.
Perhaps Hell is like this. Eternal helplessness. Eternal anxiety. Eternal loss of hope. We don't need real flames to feel the burn.
DeeDee
Eternity exists outside of time. My clocks still tick of seconds and minutes, and they are all theoretically of the same length, one compared to another. But think about how time passes while you sleep. There is very little sense of time passing, yet you fall asleep in one day and wake up in another.
This wait is the opposite of that. Watching your child suffer takes you outside of time and into a new, eternal dimension that makes each second expand exponentially into something that touches on forever. Everytime I see those sunglasses, time slows, and slows, and slows. We go through what is now a nearly daily routine - check temperature, check blood pressure, use the one-to-ten pain scale to evaluate neck and head pain. I check for true signs of meningitis DAILY, and sometimes more than three times in a day. It makes me late for work. It makes my heart pause whenever my phone rings. It makes me crazed and fearful. It makes me feel helpless, and alone.
Babygirl and I have more or less reached a point of apathy. We go through the motions, take medications, push fluids and rest. And we wait.
Four more days.
Perhaps Hell is like this. Eternal helplessness. Eternal anxiety. Eternal loss of hope. We don't need real flames to feel the burn.
DeeDee
Wednesday, November 7, 2012
Grateful for Freedom...
I'm incredibly grateful that I live in this country. For all of our flaws, it remains, and will remain, the best place in the world to live. Despite the incredibly divisive pre-election craziness, I have nothing but good thoughts about the future of our nation.
For the record, I voted for President Obama (for the second time). I clearly have a lot at stake. Without the Affordable Health Care Act, Babygirl's future is even more uncertain that it currently is. My work serving the poor is more promising in this environment. I'm not looking for Platinum Card Club/first-class-seat medical care for everybody. But there should be room in coach for everybody. Heck, I'll settle for Greyhound care as a basic start.
I'm hoping for a gentler, more tolerant future for my kids. As a child who had to learn that the N-word was not appropriate anymore, I want my kids to learn that the F-word ('faggot!") is not appropriate either. I want equal rights for everybody. I want my 20-somethings to have a chance at decent work for a living wage.
I pray that both political sides of our nation come together to work for the common good.
DeeDee
For the record, I voted for President Obama (for the second time). I clearly have a lot at stake. Without the Affordable Health Care Act, Babygirl's future is even more uncertain that it currently is. My work serving the poor is more promising in this environment. I'm not looking for Platinum Card Club/first-class-seat medical care for everybody. But there should be room in coach for everybody. Heck, I'll settle for Greyhound care as a basic start.
I'm hoping for a gentler, more tolerant future for my kids. As a child who had to learn that the N-word was not appropriate anymore, I want my kids to learn that the F-word ('faggot!") is not appropriate either. I want equal rights for everybody. I want my 20-somethings to have a chance at decent work for a living wage.
I pray that both political sides of our nation come together to work for the common good.
DeeDee
Sunday, November 4, 2012
Lazy and Peaceful.....
It's nice to have a Sunday with nothing really to do. After Sunday school and church I came home and changed into my jammies. Oh, I did a couple of loads of wash, and paid a couple of bills, but mostly I sat reading and snacking (and at least some of it was fruit LOL). A couple of glasses of wine finished my evening.
Citygirl is here and she did all of the cooking yesterday for a nice family dinner, and there is chicken soup simmering on the stove for anyone who wants something nutritious to eat - I made Babygirl go outside and pull up some carrots for the soup earlier.
Today's headache was a kinder, gentler headache. It started early in the morning and went away in less than two hours by itself. Here's hoping the steroids have kicked in and we'll have a more peaceful week. I'm crossing finger and toes and lighting a candle. (I probably should have done all of that in the other order.)
Eight days until neurology give us an opinion.
DeeDee
Citygirl is here and she did all of the cooking yesterday for a nice family dinner, and there is chicken soup simmering on the stove for anyone who wants something nutritious to eat - I made Babygirl go outside and pull up some carrots for the soup earlier.
Today's headache was a kinder, gentler headache. It started early in the morning and went away in less than two hours by itself. Here's hoping the steroids have kicked in and we'll have a more peaceful week. I'm crossing finger and toes and lighting a candle. (I probably should have done all of that in the other order.)
Eight days until neurology give us an opinion.
DeeDee
Saturday, November 3, 2012
Curing Migraine....
Two years ago when my migraines suddenly took over my life, I got a LOT of suggestions for things that would improve the situation. Now that Babygirl is riding in the same boat (I HOPE it's the same boat - I really don't want anything worse than migraine!) I am getting a ton more.
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
Friday, November 2, 2012
What I Learned In the ER.....
This morning, more of what we've gotten sadly used to - a bad headache, nausea, light and sound sensitivity, and the added bonus, neck stiffness and pain. I gave Babygirl her headache meds and called CHOP, getting the same on-call nephrologist I got last week.
Like me, she's concerned about the neck pain. It's not a typical migraine symptom, and it's a new player in this game. She called neurology. They can't move up her appointment. She advised me to take Babygirl to the local Emergency Room to try, once again, to break the headache, and to have them call neurology for further advice.
Sigh. But if you ask a question of an expert, you can't always expect to get an answer that you like. And generally, you are a fool if you disregard such advice. So we went.
To give our ER as much credit as possible, I have to say they were overwhelmed. We went to a room pretty quickly, but I could hear, over and over and over again, overhead pages asking the doctors to take calls from incoming ambulances. And what I heard wasn't "We're coming in with some moron with an ankle sprain" but "we have an 82 year old with a heart rate of 160 and dizziness."
We had an awesome nurse. She's the same one who rode all the way to CHOP with us in an ambulance last spring. The doc, not so much. He popped in, barely stayed long enough for me to point out that yes, it was only a headache, but the nephrologist told us to come in because of the neck symptoms and that she recommended imaging of Babygirl's neck.
I don't think the imaging she was hoping for was a simple neck x-ray, but that's what we got. I'm guessing she was hoping for a view or two of the spinal cord, but hey. We were there from before 9 AM until 3:30 PM. She got IV meds shortly before 11, more than an hour after we were told that that was what the plan was. We were discharged without being told the results of bloodwork or xrays. I cried in front of the nurses and got ugly with the doctor.
So what I learned in the ER this morning is that I'm not going back. I'm not asking again until I see the neurologist ten (LONG) days from now what it is that is causing this pain, or what anyone plans to do about it. I'll give her the meds we have, keep her home from school if she has a headache, and ask everyone I know to pray for us both.
DeeDee
Like me, she's concerned about the neck pain. It's not a typical migraine symptom, and it's a new player in this game. She called neurology. They can't move up her appointment. She advised me to take Babygirl to the local Emergency Room to try, once again, to break the headache, and to have them call neurology for further advice.
Sigh. But if you ask a question of an expert, you can't always expect to get an answer that you like. And generally, you are a fool if you disregard such advice. So we went.
To give our ER as much credit as possible, I have to say they were overwhelmed. We went to a room pretty quickly, but I could hear, over and over and over again, overhead pages asking the doctors to take calls from incoming ambulances. And what I heard wasn't "We're coming in with some moron with an ankle sprain" but "we have an 82 year old with a heart rate of 160 and dizziness."
We had an awesome nurse. She's the same one who rode all the way to CHOP with us in an ambulance last spring. The doc, not so much. He popped in, barely stayed long enough for me to point out that yes, it was only a headache, but the nephrologist told us to come in because of the neck symptoms and that she recommended imaging of Babygirl's neck.
I don't think the imaging she was hoping for was a simple neck x-ray, but that's what we got. I'm guessing she was hoping for a view or two of the spinal cord, but hey. We were there from before 9 AM until 3:30 PM. She got IV meds shortly before 11, more than an hour after we were told that that was what the plan was. We were discharged without being told the results of bloodwork or xrays. I cried in front of the nurses and got ugly with the doctor.
So what I learned in the ER this morning is that I'm not going back. I'm not asking again until I see the neurologist ten (LONG) days from now what it is that is causing this pain, or what anyone plans to do about it. I'll give her the meds we have, keep her home from school if she has a headache, and ask everyone I know to pray for us both.
DeeDee
Thursday, November 1, 2012
Week Eighty - Whining....
Babygirl got a lot of loot last night considering she was really only up for about two blocks of candy looting. But the grandbabies came along, and their inability to go the distance spared me the necessity of making her be the one to "give up."
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
Wednesday, October 31, 2012
Trick or Treat....
Two years ago, before we knew that Babygirl had no kidney function, was the last time she could have gone trick-or-treating without worrying about following a specific diet. She was stick thin, atheletic, and ate like crazy. I remember, though, that she wasn't feeling well that day, although I can't recall why. We went around the block with my nephew, who was dressed in his finest chain mail, sword in hand (it's some serious chain mail - he's over six feet tall), collected a little candy and came home early.
Last year, (http://kidneedsakidney.blogspot.com/2011/10/week-twenty-eighthappy-halloween.html ) she felt well but wasn't allowed to have much candy.
This year, she has a headache.
It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening. If you are sick on Friday, you are too sick to participate in fun events for the entire weekend. None of my kids faked sick more than a couple of days that I know of. And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses.
But what about tonight? She's not sick sick, she's headache sick. The pain will probably be gone by 1 o'clock this afternoon. If we're lucky, the school will send her tutor out after school. So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?
This falls into the category of trying not to raise a brat. I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed. And that's as it should be. She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time.
But what about this sort of thing? How do I balance this stuff out? Is this a discipline issue? A health issue? A life-is-short-let-her-do-whatevertheheck-she-can issue?
I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!). But some of these choices just stink. Say yes to the candy bar? Buy the newest gadget? Allow more video games? Let her get away with watching Glee reruns instead of reading? (Sometimes, no, no, yes.)
This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering. If she were dying, well, heck, give her whatever she wants whenever she wants it. But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants.
I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating. But it would have been a stupid question. She was wearing sunglasses, gagging on her medications, and refusing to eat. It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.
Except how to stop the headache from coming back.
Screw this. She's trick-or-treating. And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.
DeeDee
Last year, (http://kidneedsakidney.blogspot.com/2011/10/week-twenty-eighthappy-halloween.html ) she felt well but wasn't allowed to have much candy.
This year, she has a headache.
It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening. If you are sick on Friday, you are too sick to participate in fun events for the entire weekend. None of my kids faked sick more than a couple of days that I know of. And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses.
But what about tonight? She's not sick sick, she's headache sick. The pain will probably be gone by 1 o'clock this afternoon. If we're lucky, the school will send her tutor out after school. So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?
This falls into the category of trying not to raise a brat. I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed. And that's as it should be. She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time.
But what about this sort of thing? How do I balance this stuff out? Is this a discipline issue? A health issue? A life-is-short-let-her-do-whatevertheheck-she-can issue?
I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!). But some of these choices just stink. Say yes to the candy bar? Buy the newest gadget? Allow more video games? Let her get away with watching Glee reruns instead of reading? (Sometimes, no, no, yes.)
This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering. If she were dying, well, heck, give her whatever she wants whenever she wants it. But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants.
I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating. But it would have been a stupid question. She was wearing sunglasses, gagging on her medications, and refusing to eat. It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.
Except how to stop the headache from coming back.
Screw this. She's trick-or-treating. And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.
DeeDee
Tuesday, October 30, 2012
A Little Delay.......
Frankenstorm was kind to us. A few trees and branches here and there, some wandering trash cans, an entirely new and foreign pile of leaves in the backyard.
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
Sunday, October 28, 2012
Preparing for the Storm....
Frankenstorm is moving slowly toward us. Predictions have varied widely, and our community, still reeling from last years' flooding, is feeling some fear. Before I left the office Friday they made us get everything up off the floors and bottom shelves. Stores have been crazy. You can't find batteries, propane tanks or generators. I imagine sump pumps are in short supply too. Shopping carts are full of bottled water. I've seen lines at gas stations, and a lot of general crankiness. Considering that a third of our city was evacuated last year, and many people lost their homes and businesses, the fear is completely understandable.
Babygirl and I spent the day raking leaves, taking down the bike shelter and getting bikes and lawn furniture into the basement. While we were at it, we took all the stuff from the basement that is going to the church rummage sale out to the car, and drove it to the church. This was about three hours of intense labor, and we had a good time doing it. I paid her in Dunkin Donuts iced coffee, with a Boston Cream donut thrown in for good measure (two treats that were forbidden on the dialysis diet by the way). Tomorrow I will fill the bathtub so we have water to flush with if the power goes out. We are as prepared as we can be, I suppose.
But there are storms that you can never prepare for, hurricanes of the body and soul that teach you the true meaning of fear. There is nothing short of life itself that we can lose in a storm worse than what we have already lost. And nothing short of miraculous healing can happen better than what we have experienced this year.
Because for every soul-searing loss, there has been a flood of kindness, prayer and support. If ever I wondered if I was loved or cared for, there can be no remaining doubt - I am. If ever I thought to lose faith in the goodness of the people around me, I cannot consider it. And for all my questions about the love and faithfulness of God, I have to trust that it is His hands at work through the people around me. If they love, and are good, and keep faith, then God will do no less.
So if you see me rant at God, ignore it. He does.
DeeDee
Babygirl and I spent the day raking leaves, taking down the bike shelter and getting bikes and lawn furniture into the basement. While we were at it, we took all the stuff from the basement that is going to the church rummage sale out to the car, and drove it to the church. This was about three hours of intense labor, and we had a good time doing it. I paid her in Dunkin Donuts iced coffee, with a Boston Cream donut thrown in for good measure (two treats that were forbidden on the dialysis diet by the way). Tomorrow I will fill the bathtub so we have water to flush with if the power goes out. We are as prepared as we can be, I suppose.
But there are storms that you can never prepare for, hurricanes of the body and soul that teach you the true meaning of fear. There is nothing short of life itself that we can lose in a storm worse than what we have already lost. And nothing short of miraculous healing can happen better than what we have experienced this year.
Because for every soul-searing loss, there has been a flood of kindness, prayer and support. If ever I wondered if I was loved or cared for, there can be no remaining doubt - I am. If ever I thought to lose faith in the goodness of the people around me, I cannot consider it. And for all my questions about the love and faithfulness of God, I have to trust that it is His hands at work through the people around me. If they love, and are good, and keep faith, then God will do no less.
So if you see me rant at God, ignore it. He does.
DeeDee
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