Babygirl stayed in school all day yesterday, and had 2 hours of tutoring at home after school. When I asked how her head was, she told me that she'd had a slight headache for most of the school day. She took some Tylenol when she got home and it cleared completely by dinnertime. She wanted me to go Halloween costume hunting with her today, so I asked if she could help with some of my chores so I'd have more time free.
When I woke up in the morning, her chores were all done. Plus, she'd unloaded, reloaded, and re-unloaded the dishwasher, cleaned the stove and kitchen counters, and dusted the living and dining rooms. Like me, the post-migraine state is sometimes accompanied by an energy burst!
She awoke headache free, and has stayed that way all day.
I'll take it.
DeeDee
Saturday, October 27, 2012
Thursday, October 25, 2012
Week Seventy-nine - Please Stop.....
Babygirl awoke this morning headache-free. We said good bye to my sister-in-law and got into Rhonda the Honda before 6 AM. She fell asleep. At 7:30 we stopped at McDonald's for breakfast. She woke up complaining of nausea and light sensitivity. I gave her the Reglan and some Tylenol with her morning meds and we drove on. She fell asleep.
We arrived home at 9, and she woke up feeling better, so I dropped her off at school on my way to work.
She called at 12:30. "I have a headache. And I feel sick to my stomach."
Hubby went and picked her up.
So far this week she's attended 3 hours of school.
I came home from work and cried.
DeeDee
We arrived home at 9, and she woke up feeling better, so I dropped her off at school on my way to work.
She called at 12:30. "I have a headache. And I feel sick to my stomach."
Hubby went and picked her up.
So far this week she's attended 3 hours of school.
I came home from work and cried.
DeeDee
Wednesday, October 24, 2012
Two Visits in Two Days....
Babygirl's headache woke her up at 5:15 this morning. She got up, took pain meds and went back to sleep. I woke her at 7 to take her anti-rejection meds, and she told me the headache was still a 10/10, that she felt like throwing up, and that it her her neck to bend her head down or to turn her head. No fever, blood pressure okay, but DANG - that's a meningitis sign.
I called the on-call nephrologist and told her the story of the last two weeks. She advised me to take Babygirl back to our local ER so they could put her in an ambulance to CHOP if she looked really ill, or to pack her up and bring her in myself if she didn't look too bad. I opted for the latter - called in to work and hopped in the shower.
Somewhere between work yesterday and this morning I lost track of my phone. The innumerable calls Hubby and I made searching for it killed the battery. When I called in to work, I asked if my phone was there, and it was, on my desk, dead. Dead dead. I have no car charger for this phone, but I have a large number of miscellaneous cords that were at least similar so I grabbed a handful of them, hoping I could hook it to the USB charger in the car.
We got to the CHOP ER before noon, and of course by then Babygirl was ranking the headache a 1 on the 1-10 scale, but they listened carefully to the whole story, and because she was still refusing to have lights on without her sunglasses, they respected the fact that she was, indeed, still not recovered from this headache. Using the resolution of her photophobia as their endpoint goal, they started treatment. By four o'clock she was headache and photophobia free for the first time in three days. She wanted pizza. She's been chatty. She wanted the radio on in the car. It was very, very good to see.
But the other thing they really listened to was my concern about what to do tomorrow if the headache is back. They consulted with pharmacy, nephrology and neurology, came up with a plan and discussed it with the family doc so he knows what to do next, if needed.
A PLAN. Somebody else thinking ahead to the next crisis. I can't describe what a relief it is to be sharing that load.
DeeDee
I called the on-call nephrologist and told her the story of the last two weeks. She advised me to take Babygirl back to our local ER so they could put her in an ambulance to CHOP if she looked really ill, or to pack her up and bring her in myself if she didn't look too bad. I opted for the latter - called in to work and hopped in the shower.
Somewhere between work yesterday and this morning I lost track of my phone. The innumerable calls Hubby and I made searching for it killed the battery. When I called in to work, I asked if my phone was there, and it was, on my desk, dead. Dead dead. I have no car charger for this phone, but I have a large number of miscellaneous cords that were at least similar so I grabbed a handful of them, hoping I could hook it to the USB charger in the car.
We got to the CHOP ER before noon, and of course by then Babygirl was ranking the headache a 1 on the 1-10 scale, but they listened carefully to the whole story, and because she was still refusing to have lights on without her sunglasses, they respected the fact that she was, indeed, still not recovered from this headache. Using the resolution of her photophobia as their endpoint goal, they started treatment. By four o'clock she was headache and photophobia free for the first time in three days. She wanted pizza. She's been chatty. She wanted the radio on in the car. It was very, very good to see.
But the other thing they really listened to was my concern about what to do tomorrow if the headache is back. They consulted with pharmacy, nephrology and neurology, came up with a plan and discussed it with the family doc so he knows what to do next, if needed.
A PLAN. Somebody else thinking ahead to the next crisis. I can't describe what a relief it is to be sharing that load.
DeeDee
Tuesday, October 23, 2012
Record Breaker....
Babygirl awoke with a severe headache yesterday, and ranked it a '10' on the one-to-ten pain scale. Remembering that this child has some basis for comparison, I have to take that ranking fairly seriously. She took her meds, went back to bed, and was still complaining of pain when I arrived home from work despite multiple doses. She went to bed with that same headache.
This morning was another '10'. I called the family doc and explained the situation to his nurse, asking for an appointment. I figured maybe we could arrange the MRI that I know the neurologists are going to ask for anyway, and get a head start on things. I mean, nothing has changed except for the extreme persistence of this headache. She's not fond of light, but there's nothing else going on.
The answer was a fairly resounding 'no'. Take her to the ER, they said. Get the pain to stop, they said. Sigh.
It was my once-a-month afternoon off. I came home, and she'd had a second dose of pain meds one hour before I arrived, and ranked the headache at a 5, so off we went. We got to the ER at 2:30, and were put into a room fairly quickly, but it was more than an hour before the nurse came in, and even longer before the doc arrived. They gave her benedryl and phenergan IV (both antihistamines, the second commonly used for nausea, apparently the treatment du jour for headaches regardless of cause) and fluid. They did a CT scan, the standard ER test, which I guaran-damn-tee you will say in its final report that an MRI would give more information. It was normal. They did blood work. They kept us while she slept. Every time they woke her up she told them the headache was no better. They let us go when I pointed out that they either needed to let us go so she could take her anti-rejection meds or they needed to give them to her.
We got home at 8:30, she ate a little dinner (her first meal of the day), and took some pain meds and went to bed. With the headache. Please God that she'll awaken without one in the morning. There are records we don't want to break.
Lordy.
DeeDee
This morning was another '10'. I called the family doc and explained the situation to his nurse, asking for an appointment. I figured maybe we could arrange the MRI that I know the neurologists are going to ask for anyway, and get a head start on things. I mean, nothing has changed except for the extreme persistence of this headache. She's not fond of light, but there's nothing else going on.
The answer was a fairly resounding 'no'. Take her to the ER, they said. Get the pain to stop, they said. Sigh.
It was my once-a-month afternoon off. I came home, and she'd had a second dose of pain meds one hour before I arrived, and ranked the headache at a 5, so off we went. We got to the ER at 2:30, and were put into a room fairly quickly, but it was more than an hour before the nurse came in, and even longer before the doc arrived. They gave her benedryl and phenergan IV (both antihistamines, the second commonly used for nausea, apparently the treatment du jour for headaches regardless of cause) and fluid. They did a CT scan, the standard ER test, which I guaran-damn-tee you will say in its final report that an MRI would give more information. It was normal. They did blood work. They kept us while she slept. Every time they woke her up she told them the headache was no better. They let us go when I pointed out that they either needed to let us go so she could take her anti-rejection meds or they needed to give them to her.
We got home at 8:30, she ate a little dinner (her first meal of the day), and took some pain meds and went to bed. With the headache. Please God that she'll awaken without one in the morning. There are records we don't want to break.
Lordy.
DeeDee
Monday, October 22, 2012
A Pain in the Head......
Babygirl has complained of headaches off and on since about the age of seven. We mentioned it to the family doc, and because they were few and far between, and had no other alarming associated symptoms, he recommended 'watchful waiting'. When Babygirl started having periods at age nine, he was fairly convinced that she had common migraine, which typically has its onset one to two years before puberty. The headaches didn't seem to increase in frequency at that time, and there continued to be no alarming symptoms, so we continued watching.
Since the kidney failure diagnosis, the headaches have become more common. Dialysis didn't improve them. Transplant has not made them better. They were a fairly regular occurrence, but not disabling, until April. Whatever undefined infection she had back in April that put her in the hospital seems to have set off a persistent run of more frequent, more severe, and more disabling headaches. She had a horrible headache throughout that episode, and they've been occurring at least three times weekly since then.
The transplant team has gotten her blood pressure under control, and they have not improved. They've put her on blood pressure meds known to help prevent migraine, and they are actually somewhat worse.
In the past three weeks she has left school early twice because of headaches, and twice has not gone to school in the morning due to headaches. She awakens with them (but not from them). They start up randomly in the middle of the school day. They put plans on hold on weekends. They can put her to bed in the early evening. Actually, as I think about it, I'm realizing that they occur more than three times a week. She is clearing a bottle of 100 Tylenol every two months. The team gave her tramadol (a non-narcotic non-NSAID pain reliever) to use when Tylenol isn't helping. She started with 20 pills four weeks ago. She had ten left this morning. .
I've been in a bit of denial about all of this. After all, what's a headache or two dozen compared to the reality of kidney transplantation and dialysis? But I know from my own experience that they can be serious, and have serious consequences of their own.
So, I'm treating my craniorectal impaction, and paying better attention. I've started a headache diary for her. She has a neurology appointment on November 12. I'm guessing that they'll maybe want some pictures of her brain. Yippee skippy.
DeeDee
Since the kidney failure diagnosis, the headaches have become more common. Dialysis didn't improve them. Transplant has not made them better. They were a fairly regular occurrence, but not disabling, until April. Whatever undefined infection she had back in April that put her in the hospital seems to have set off a persistent run of more frequent, more severe, and more disabling headaches. She had a horrible headache throughout that episode, and they've been occurring at least three times weekly since then.
The transplant team has gotten her blood pressure under control, and they have not improved. They've put her on blood pressure meds known to help prevent migraine, and they are actually somewhat worse.
In the past three weeks she has left school early twice because of headaches, and twice has not gone to school in the morning due to headaches. She awakens with them (but not from them). They start up randomly in the middle of the school day. They put plans on hold on weekends. They can put her to bed in the early evening. Actually, as I think about it, I'm realizing that they occur more than three times a week. She is clearing a bottle of 100 Tylenol every two months. The team gave her tramadol (a non-narcotic non-NSAID pain reliever) to use when Tylenol isn't helping. She started with 20 pills four weeks ago. She had ten left this morning. .
I've been in a bit of denial about all of this. After all, what's a headache or two dozen compared to the reality of kidney transplantation and dialysis? But I know from my own experience that they can be serious, and have serious consequences of their own.
So, I'm treating my craniorectal impaction, and paying better attention. I've started a headache diary for her. She has a neurology appointment on November 12. I'm guessing that they'll maybe want some pictures of her brain. Yippee skippy.
DeeDee
Sunday, October 21, 2012
I've Got A Penguin.....
"I'm dead! Quick, freeze me!"
"Stop jumping on my head!"
"Could you please pop my bubble?"
"I've got a penguin but I DON'T KNOW WHAT TO DO WITH IT!!!!"
When the kids were little, we didn't allow video games. We didn't have cable. We had a good video collection, and rented new ones as needed. I always felt that the games were a bad idea - they discourage exercise, and limit imagination. And commercial TV was just that - endless commercials, creating a desire for things that were neither necessary nor healthy.
When the foster kids arrived, LittleMan considered his older sister to be his mom. He slept with her, and it was her job to keep him quiet so biomom could do whatever biomom did. We decided, that at five years of age, he was old enough to learn to sleep alone; and she was too young, at thirteen, to have to be his 'mom'. The first night, he cried for his sister for 45 minutes. Then, he began to beg for a video game. Not his mom. Not the grandma he'd been living with before we got them. A VIDEO game. It was how he calmed himself down, and how she'd kept him quiet. It confirmed for us that we were on the right track in forbidding these things.
But time goes on, and things change, and when the Wii came out, we decided that this might be the exception to the no-video-games rule. The games we chose were things that the family could do together - bowling tournaments, darts, tennis and the like. Rock Band Hero was played by up to four people and taught the kids to appreciate some classic rock. And all the games required movement, so no zombie-like screen-gazing.
A couple of years ago, I bought a more traditional game, Mario. None of my kids had ever played it before but it looked interesting because it could be played by up to four people at one time. I've never played, but it's hysterical to watch the kids play it, and pretty funny just to listen in.
By the way, you need to throw your penguin at the fish.
DeeDee
"Stop jumping on my head!"
"Could you please pop my bubble?"
"I've got a penguin but I DON'T KNOW WHAT TO DO WITH IT!!!!"
When the kids were little, we didn't allow video games. We didn't have cable. We had a good video collection, and rented new ones as needed. I always felt that the games were a bad idea - they discourage exercise, and limit imagination. And commercial TV was just that - endless commercials, creating a desire for things that were neither necessary nor healthy.
When the foster kids arrived, LittleMan considered his older sister to be his mom. He slept with her, and it was her job to keep him quiet so biomom could do whatever biomom did. We decided, that at five years of age, he was old enough to learn to sleep alone; and she was too young, at thirteen, to have to be his 'mom'. The first night, he cried for his sister for 45 minutes. Then, he began to beg for a video game. Not his mom. Not the grandma he'd been living with before we got them. A VIDEO game. It was how he calmed himself down, and how she'd kept him quiet. It confirmed for us that we were on the right track in forbidding these things.
But time goes on, and things change, and when the Wii came out, we decided that this might be the exception to the no-video-games rule. The games we chose were things that the family could do together - bowling tournaments, darts, tennis and the like. Rock Band Hero was played by up to four people and taught the kids to appreciate some classic rock. And all the games required movement, so no zombie-like screen-gazing.
A couple of years ago, I bought a more traditional game, Mario. None of my kids had ever played it before but it looked interesting because it could be played by up to four people at one time. I've never played, but it's hysterical to watch the kids play it, and pretty funny just to listen in.
By the way, you need to throw your penguin at the fish.
DeeDee
Friday, October 19, 2012
As Good As.....
A friend who follows the blog and I were chatting the other day. Babygirl's tendency to catch every bug and miss a lot of school was clearly on her mind when she asked, "So, is this as good as it gets?"
It's a good question, and one I'd probably prefer not to think about. Babygirl has yet to make it to a swim practice because of illness. She's in school today, but there's no practice on Friday, and she wouldn't have made it if there were - she left school early because of a headache. Saturday practice is from 10 - 12. Her tutor is coming at 11. She needs the tutor - she's already missed 10 days of school, give or take. When she's feeling well, she feels GREAT. And when she's not, it stinks. She'd have been back to school yesterday except that she woke up with a blinding migraine (you know it's not going to be a great day when your kid arrives at the breakfast table wearing sunglasses).
There is no way for me to guess how the next day is going to go, let alone the next week, month, year. I do my very best to enjoy each day for whatever it brings, rejoicing when (if) we are healthy, and relaxing if (when!) we aren't. I'm hoping that this past months' ill health is a run of crappy luck and nothing more. Because I really, REALLY don't want this to be as good as it gets. I want to be able to breathe well enough to exercise again (I actually made it to work out 3 times this week, but it was a struggle). I want Hubby's back to heal so that every movement isn't some form of torture. I want Babygirl to have no reason to expect that she's going to get sick on any given day.
I guess what I'd really wish is to catch a time machine and go back about 3 years so I could spend this month looking forward to a winter of skiing with Babygirl and JujuBee instead of Philly runs. I'd like to go back to being able to plan more than 24 hours ahead, instead of planning Baked Potato Bar night with friends (a great way to entertain, by the way) and ending up in the ER instead. I'd like to go back to being the mom of the kid with perfect school attendence.
I've always seen myself as fairly flexible. I may be slightly (ahemmm) Type A, but I'm not "Plan A," meaning that if our first plan doesn't work, I'm willing to go with the flow instead of struggling to meet an unattainable expectation (can't go camping this weekend? How about a barbecue at home instead?). But lately it feels as if so very MANY of our expectations are unattainable. Babygirl's limits limit all of us, all of the time, and my life sometimes feels almost claustrophobic.
There is no profound take-home lesson here. It simply sucks. I often say, "It is what it is." Accepting hard times alternating with good times is natural. Adjusting to hard times as a more permanent condition of life? Less so.
What if this IS as good as it gets?
God grant me the grace to be grateful. Because at the bottom of it all, it is good; and it's much, much better than it was.
DeeDee
It's a good question, and one I'd probably prefer not to think about. Babygirl has yet to make it to a swim practice because of illness. She's in school today, but there's no practice on Friday, and she wouldn't have made it if there were - she left school early because of a headache. Saturday practice is from 10 - 12. Her tutor is coming at 11. She needs the tutor - she's already missed 10 days of school, give or take. When she's feeling well, she feels GREAT. And when she's not, it stinks. She'd have been back to school yesterday except that she woke up with a blinding migraine (you know it's not going to be a great day when your kid arrives at the breakfast table wearing sunglasses).
There is no way for me to guess how the next day is going to go, let alone the next week, month, year. I do my very best to enjoy each day for whatever it brings, rejoicing when (if) we are healthy, and relaxing if (when!) we aren't. I'm hoping that this past months' ill health is a run of crappy luck and nothing more. Because I really, REALLY don't want this to be as good as it gets. I want to be able to breathe well enough to exercise again (I actually made it to work out 3 times this week, but it was a struggle). I want Hubby's back to heal so that every movement isn't some form of torture. I want Babygirl to have no reason to expect that she's going to get sick on any given day.
I guess what I'd really wish is to catch a time machine and go back about 3 years so I could spend this month looking forward to a winter of skiing with Babygirl and JujuBee instead of Philly runs. I'd like to go back to being able to plan more than 24 hours ahead, instead of planning Baked Potato Bar night with friends (a great way to entertain, by the way) and ending up in the ER instead. I'd like to go back to being the mom of the kid with perfect school attendence.
I've always seen myself as fairly flexible. I may be slightly (ahemmm) Type A, but I'm not "Plan A," meaning that if our first plan doesn't work, I'm willing to go with the flow instead of struggling to meet an unattainable expectation (can't go camping this weekend? How about a barbecue at home instead?). But lately it feels as if so very MANY of our expectations are unattainable. Babygirl's limits limit all of us, all of the time, and my life sometimes feels almost claustrophobic.
There is no profound take-home lesson here. It simply sucks. I often say, "It is what it is." Accepting hard times alternating with good times is natural. Adjusting to hard times as a more permanent condition of life? Less so.
What if this IS as good as it gets?
God grant me the grace to be grateful. Because at the bottom of it all, it is good; and it's much, much better than it was.
DeeDee
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