Oh, not to worry - it was a soft landing, directly onto a memory foam mattress.
I was wound up tighter that a clock all day yesterday. I got a lot done. Huge thanks are due to Babygirl for suggesting that today's contribution to the pot luck lunch at church could be banana bread! What an eye for using up what you have on hand! (Nancy, I made one with no nuts for you!)
I ran errands. I made Curlygirl's birthday cake (still need to frost it and pick up ice cream). Finished cleaning (the catbox is DONE). Played a couple of games of Dominion with Hubby. Went online and caught up all my Words With Friends games.
And at 9:30, every ounce of alertness just drained right out of my body.
I usually read for at least a half an hour before I can fall asleep. I was out on the first paragraph, and didn't wake once until my morning text message reminder.
Ahhh......
It's nice to look forward to a day with family and church friends with no more to do than prepare a simple meal. Curlygirl always wants goulash for her birthday. And I like put together a 3 layer cake, so it's all good.
DeeDee
Sunday, September 30, 2012
Saturday, September 29, 2012
It Isn't Clean 'til I Say So........
When my kids were younger, and there were seven in the house at one time, it was impossible to supervise any chore on a minute-by-minute basis. So when a child would come and tell me they were finished with something and wanted to run off and do something more fun than help around the house, I would frequently have the following conversation:
"Is it clean?" "Yes!"
"Are you SURE?" "YES!"
"Would I think it's clean? Because it isn't clean 'til I say so."
This would be followed either by silent chagrin or a bluff, depending on the day or child. After all, they COULD hope I wouldn't check, and sometimes they did win the gamble, especially since they were all gifted at asking at times when my hands were busy and I couldn't drop everything.
Last night my insomnia mated with my steroids, and despite a benedryl and some melatonin, I was wide awake at midnight, and very energetic. We were all sick last weekend, and NOTHING (including, I confess, the catbox) got cleaned. Even in my steroid-induced state I realized that I was unlikely to have the energy this weekend to do everything I need to do as well as I would like to, so I looked around and prioritized.
Babygirl and I did an excellent job two weeks ago. Dust is relatively unimportant. Woodwork only really needs wiping withing the range of our dirty fingers. And the dog hair has GOT to go.
By three AM I had done a very respectable job in the living room and dining room. I awoke this morning and cleaned the kitchen, one bathroom, and the side of the house that is perpetually under construction, including mopping all floors and stairs. My bedroom is swept, upstairs trash is ready to remove, and all I have left? It's the damned catbox.
But.....If I skipped ripping the stove apart to clean under the drip trays, and cleaning my bedroom did not actually include making my bed, and there's dust on the mantle, is it really clean?
It is if I say so.
I'll say it again: The key to having a good day is lowering your standards.
DeeDee
"Is it clean?" "Yes!"
"Are you SURE?" "YES!"
"Would I think it's clean? Because it isn't clean 'til I say so."
This would be followed either by silent chagrin or a bluff, depending on the day or child. After all, they COULD hope I wouldn't check, and sometimes they did win the gamble, especially since they were all gifted at asking at times when my hands were busy and I couldn't drop everything.
Last night my insomnia mated with my steroids, and despite a benedryl and some melatonin, I was wide awake at midnight, and very energetic. We were all sick last weekend, and NOTHING (including, I confess, the catbox) got cleaned. Even in my steroid-induced state I realized that I was unlikely to have the energy this weekend to do everything I need to do as well as I would like to, so I looked around and prioritized.
Babygirl and I did an excellent job two weeks ago. Dust is relatively unimportant. Woodwork only really needs wiping withing the range of our dirty fingers. And the dog hair has GOT to go.
By three AM I had done a very respectable job in the living room and dining room. I awoke this morning and cleaned the kitchen, one bathroom, and the side of the house that is perpetually under construction, including mopping all floors and stairs. My bedroom is swept, upstairs trash is ready to remove, and all I have left? It's the damned catbox.
But.....If I skipped ripping the stove apart to clean under the drip trays, and cleaning my bedroom did not actually include making my bed, and there's dust on the mantle, is it really clean?
It is if I say so.
I'll say it again: The key to having a good day is lowering your standards.
DeeDee
Friday, September 28, 2012
The Spot.....
Babygirl returned to school today for the first time since Godzilla stomped into her on Sunday (see previous post LOL). She lasted until the end of third period. Thanks, Nancy, for going to rescue her from the nurse's office!
So, to make us all feel better, Babygirl used her one of the many gifts she received at her Make-A-Wish party to take hubby and I out for dessert tonight! I had a cherry cheese puff. Hubby had baklava, and Babygirl chose a brownie sundae. We all had coffee, and had another fascinating conversation about Spandex.
It was a lovely break after a very tough week.
Thank you, Spot Restaurant, for supporting Make-A-Wish. Everybody go and "Like" The Spot to help us say thanks! http://www.facebook.com/pages/The-Spot-Restaurant/113936025297175
DeeDee
So, to make us all feel better, Babygirl used her one of the many gifts she received at her Make-A-Wish party to take hubby and I out for dessert tonight! I had a cherry cheese puff. Hubby had baklava, and Babygirl chose a brownie sundae. We all had coffee, and had another fascinating conversation about Spandex.
It was a lovely break after a very tough week.
Thank you, Spot Restaurant, for supporting Make-A-Wish. Everybody go and "Like" The Spot to help us say thanks! http://www.facebook.com/pages/The-Spot-Restaurant/113936025297175
DeeDee
Thursday, September 27, 2012
Week Seventy-five - Godzilla......
My facebook status yesterday read, "This cold is Godzilla to my Tokyo. I never saw the movie - did Tokyo make it?"
I've had asthma forever. It was probably the underlying cause of my frequent childhood bronchitis (that and parental smoking). It might even have explained my lack of respiratory endurance in gym class. But it wasn't actually diagnosed until some attending physician, tired of hearing his intern cough, made me go get tested. Overall, it's never been a major problem, never resulted in an ER visit, and never required more than a month or so of maintenance meds every few years.
But this cold.....
Godzilla settled in my chest and the coughing began. I unwrapped an inhaler that's been sitting in the medicine cabinet since last November (it expires in April for those of you who are concerned about such things LOL). And I used it. And used it. Every four hours, sometimes every three. In my experience, I'll end up needing it for a three or four days and then everything will go back to normal. I called in sick Monday and Tuesday, and then I took Godzilla to work with me yesterday.
But last night, starting at about 8, I was wracked by coughing spasms. Forceful, empty-your-lungs-and-see-the-pretty-stars spasms. I calmed it down and went to bed at 9:30, belly muscles aching. At about 10, I sat bolt upright and fought to get air in, coughing out, and keep the peels of the apple I ate before bed from blocking of my trachea as the force of the cough emptied my stomach. I went through about six 15-minute-long bouts of nonstop coughing, managing to hit my inhaler once every half an hour. The stars were starting to appear permanent. And then...
One cough was so violent I felt the entire right side of my head go numb. Have you ever turned your head suddenly and felt that burning shock go up the back of your scalp? Take that sensation all the way to the tip of your nose.
By this time it was midnight. Hubby was watching a movie in another room, so I went and alerted him (okay, I'm slow - but I couldn't breathe, okay?). We contacted Curlygirl. Squeaker's been sick, so she was up anyway. Hubby dropped me at the ER, and went to get her so she could stay with Babygirl. By the time he came back, I had registered, been triaged and was on my way for a chest xray and blood work. And then we waited. And waited.
Eternity can now be defined as 1 1/2 hours in the ER waiting room increasingly struggling to breathe. I know all the tricks - I've taught them to patients. Put some weight on your hands and lean forward - it opens up the chest. Purse your lips and blow - the back pressure gets more air out. Yup. Helpful tips. Not. The head numbness resolved. Turns out it was a migraine aura, so each and every cough of each and EVERY coughing spasm sent knife blades across the right side of my brain. Thank God I had my sunglasses with me - ER lighting is harsh.
At 1:45 AM the doc arrived, looked me over briefly, and within a very few more minutes there was a respiratory therapist, a shot of summatriptan for the migraine, prednisone tablets and an IV. After the third breathing treatment, I could finally lie down without choking - around 3:30 AM. At 5:30 I was discharged after listening to the pompous ass of an ER doc (not maligning his competence, just his bedside manner) finally realized who I was and blessed me out for not pointing out my superior importance to the triage nurse (I guess sunglasses at night DO constitute a disguise).
Sigh. Doctors put their pantyhose on one leg at a time just like everybody else. I don't deserve to budge in line based on my 'status'. Truth is, they put me in ahead of several folks who had arrived before me the only one they took ahead of me was a man who looked to be about 90 years old.
I came home, took a nap, went to work, and came home for a nap. Daytime wasn't so bad.
But the coughing spasms are back. It looks like it might be a long night. I take it Godzilla stayed in Tokyo for little while?
DeeDee
I've had asthma forever. It was probably the underlying cause of my frequent childhood bronchitis (that and parental smoking). It might even have explained my lack of respiratory endurance in gym class. But it wasn't actually diagnosed until some attending physician, tired of hearing his intern cough, made me go get tested. Overall, it's never been a major problem, never resulted in an ER visit, and never required more than a month or so of maintenance meds every few years.
But this cold.....
Godzilla settled in my chest and the coughing began. I unwrapped an inhaler that's been sitting in the medicine cabinet since last November (it expires in April for those of you who are concerned about such things LOL). And I used it. And used it. Every four hours, sometimes every three. In my experience, I'll end up needing it for a three or four days and then everything will go back to normal. I called in sick Monday and Tuesday, and then I took Godzilla to work with me yesterday.
But last night, starting at about 8, I was wracked by coughing spasms. Forceful, empty-your-lungs-and-see-the-pretty-stars spasms. I calmed it down and went to bed at 9:30, belly muscles aching. At about 10, I sat bolt upright and fought to get air in, coughing out, and keep the peels of the apple I ate before bed from blocking of my trachea as the force of the cough emptied my stomach. I went through about six 15-minute-long bouts of nonstop coughing, managing to hit my inhaler once every half an hour. The stars were starting to appear permanent. And then...
One cough was so violent I felt the entire right side of my head go numb. Have you ever turned your head suddenly and felt that burning shock go up the back of your scalp? Take that sensation all the way to the tip of your nose.
By this time it was midnight. Hubby was watching a movie in another room, so I went and alerted him (okay, I'm slow - but I couldn't breathe, okay?). We contacted Curlygirl. Squeaker's been sick, so she was up anyway. Hubby dropped me at the ER, and went to get her so she could stay with Babygirl. By the time he came back, I had registered, been triaged and was on my way for a chest xray and blood work. And then we waited. And waited.
Eternity can now be defined as 1 1/2 hours in the ER waiting room increasingly struggling to breathe. I know all the tricks - I've taught them to patients. Put some weight on your hands and lean forward - it opens up the chest. Purse your lips and blow - the back pressure gets more air out. Yup. Helpful tips. Not. The head numbness resolved. Turns out it was a migraine aura, so each and every cough of each and EVERY coughing spasm sent knife blades across the right side of my brain. Thank God I had my sunglasses with me - ER lighting is harsh.
At 1:45 AM the doc arrived, looked me over briefly, and within a very few more minutes there was a respiratory therapist, a shot of summatriptan for the migraine, prednisone tablets and an IV. After the third breathing treatment, I could finally lie down without choking - around 3:30 AM. At 5:30 I was discharged after listening to the pompous ass of an ER doc (not maligning his competence, just his bedside manner) finally realized who I was and blessed me out for not pointing out my superior importance to the triage nurse (I guess sunglasses at night DO constitute a disguise).
Sigh. Doctors put their pantyhose on one leg at a time just like everybody else. I don't deserve to budge in line based on my 'status'. Truth is, they put me in ahead of several folks who had arrived before me the only one they took ahead of me was a man who looked to be about 90 years old.
I came home, took a nap, went to work, and came home for a nap. Daytime wasn't so bad.
But the coughing spasms are back. It looks like it might be a long night. I take it Godzilla stayed in Tokyo for little while?
DeeDee
Monday, September 24, 2012
Compliance.....
Compliance is a term used in medicine to indicate how well a patient if following directions. If I'm told to take a pill once a day and I do, I am compliant. If I'm told to follow a diet and exercise program, and I don't, I'm non-compliant.
With Babygirl, compliance is largely up to us. We buy the medications, make sure the refills are called in on time, sort the pills and measure the liquids into syringes. I have a text message sent to my phone twice daily from MyMedSchedule.com to remind ME to remind HER to take her medications. I take schedule her appointments, TAKE her to those appointments, and make sure any necessary tests get scheduled and performed in a timely manner.
I've been doing all of this for almost a year and a half now.
All except one thing.
We are supposed to monitor Babygirl's blood pressure at home. Daily, preferably. While she was on dialysis, I actually DID check her blood pressure daily. We went through a series of automated blood pressure units, and each had its inadequacies, not the least of which was that the dialysis team never actually believed their readings. They were so much lower when taken at the dialysis clinic. Yet, still, I got the measurements. I wrote them down daily with her weight, temperature, and the dialysis machine statistics. And because Babygirl and I were perforce together every single evening and morning to hook up and unhook the machine, it was simply a part (however useless it appeared to be) of our daily routine.
Since the transplant I have checked her pressure perhaps 3 times. Seriously. She gets it checked weekly at the clinic, more often when she's been admitted. I actually purchased a manual monitor to overcome the perception that the electronic one doesn't read accurately. And I used it. Three times. Okay, maybe four. We just aren't tied to collecting data in the way we once were.
It's become something of a joke at the transplant clinic, although I know they do not find it truly amusing. And today they decided to make their displeasure clear.
Babygirl came home today wearing a 24 hour blood pressure monitor. It will have to stay on until after her lunch period tomorrow and be removed by the school nurse. She can't go to gym at first period. At least it will be off before swim practice.
Ugh. I know they don't mean it this way, but it feels like she is being punished for MY noncompliance.
DeeDee
With Babygirl, compliance is largely up to us. We buy the medications, make sure the refills are called in on time, sort the pills and measure the liquids into syringes. I have a text message sent to my phone twice daily from MyMedSchedule.com to remind ME to remind HER to take her medications. I take schedule her appointments, TAKE her to those appointments, and make sure any necessary tests get scheduled and performed in a timely manner.
I've been doing all of this for almost a year and a half now.
All except one thing.
We are supposed to monitor Babygirl's blood pressure at home. Daily, preferably. While she was on dialysis, I actually DID check her blood pressure daily. We went through a series of automated blood pressure units, and each had its inadequacies, not the least of which was that the dialysis team never actually believed their readings. They were so much lower when taken at the dialysis clinic. Yet, still, I got the measurements. I wrote them down daily with her weight, temperature, and the dialysis machine statistics. And because Babygirl and I were perforce together every single evening and morning to hook up and unhook the machine, it was simply a part (however useless it appeared to be) of our daily routine.
Since the transplant I have checked her pressure perhaps 3 times. Seriously. She gets it checked weekly at the clinic, more often when she's been admitted. I actually purchased a manual monitor to overcome the perception that the electronic one doesn't read accurately. And I used it. Three times. Okay, maybe four. We just aren't tied to collecting data in the way we once were.
It's become something of a joke at the transplant clinic, although I know they do not find it truly amusing. And today they decided to make their displeasure clear.
Babygirl came home today wearing a 24 hour blood pressure monitor. It will have to stay on until after her lunch period tomorrow and be removed by the school nurse. She can't go to gym at first period. At least it will be off before swim practice.
Ugh. I know they don't mean it this way, but it feels like she is being punished for MY noncompliance.
DeeDee
Sunday, September 23, 2012
Accuracy.....
Keeping accurate track of Babygirl's many medications is one of the many challenges of post-transplant life. The fact that two of these medicines are now liquids makes it even harder for us to make sure that not only is she taking her meds, but that she is taking the right amount.
After all, a pill is a pill is a pill. At one point we were pill-splitting her prednisone so we wouldn't waste so many pills, but cutting a 20 mg. pill in half can be done fairly accurately and with little crumbling if you have a good pill splitter (ours has a silicone base to cushion the pill - it never accidentally crushes anything). Besides, I know what prednisone is and how it works, and I know that the difference between 10.5 mg and 9.5 mg isn't going to make a big difference in the long run.
Her Mepron is taken 10 cc (two teaspoons) at a time, a fairly high volume of liquid. If there is a bubble in the syringe taking up 0.1 cc of space, the dose is only decreased by 1%, which, given the function of the medication (prevention of parasitic infections) is insignificant.
But the Cellcept is another story. It's an anti-rejection drug, and its effectiveness for this purpose is dose dependent - more medication, less rejection. Its side effects are also dose dependent - more medication, more risk of side effects. Since one of its adverse events is neutropenia, and Babygirl HAS neutropenia, the dose has been decreased from 250 mg. in the morning and 500 mg. in the evening to 250 mg twice daily, and now to 160 mg twice daily. The smallest available pills are the 250 mg ones, so we have had to switch to liquid.
Liquid Cellcept is 200 mg. per cc. One cc is 1/5 of a teaspoon. To measure this we have 1 cc syringes - the size of an insulin syringe. She takes 0.8 cc. It is challenging to be accurate with this.
The liquid is white, and while it isn't thick, it is opaque. The first time I measured it out into 14 small syringes, I noticed that after a while I could see a pretty good sized bubble. So I set the syringes in a cup, dispensing end up so the bubble would rise. The average bubble was 0.1cc. This is a 12.5% decrease in the expected dose - 140 mg instead of 160. They already decreased her dose by over a third. This level of inaccuracy MATTERS.
In addition to that, it's been difficult to make sure the syringes of medication get taken. When it was just the Mepron, one syringe each morning, I know Babygirl forgot to take it periodically. I found one full syringe on the floor under the table the pill sorter sits on. I've had a syringe left over at the end of the week. Again, given what the medication does, I'm not too worried about the odd missed dose.
I AM worried about missed doses of anti-rejection medications.
So..... to improve compliance, I tried putting all three syringes in a plastic bag, one bag for each day. It was bulky, took up too much space on top of the pill sorter (remember, our sorter is an enormous thing the size of an old laptop), and the syringes still ended up on the floor, and we were throwing away a million little bags. So now each dose has a sticker giving day of the week and time of dose (AM/PM), and the 3 daily syringes are rubber-banded together, and the bands can be re-used. This seems effective so far.
When all we had were pills, it took less than 15 minutes to sort for a week, even when we had dozens of pills. With the syringes, and the painstaking process of removing all the bubbles, and the labels/banding/pill sorting, it takes over half an hour.
Worth it to keep her healthy, but I'll bet it's something the docs don't give even a minute's consideration to. I know I wouldn't have.
DeeDee
After all, a pill is a pill is a pill. At one point we were pill-splitting her prednisone so we wouldn't waste so many pills, but cutting a 20 mg. pill in half can be done fairly accurately and with little crumbling if you have a good pill splitter (ours has a silicone base to cushion the pill - it never accidentally crushes anything). Besides, I know what prednisone is and how it works, and I know that the difference between 10.5 mg and 9.5 mg isn't going to make a big difference in the long run.
Her Mepron is taken 10 cc (two teaspoons) at a time, a fairly high volume of liquid. If there is a bubble in the syringe taking up 0.1 cc of space, the dose is only decreased by 1%, which, given the function of the medication (prevention of parasitic infections) is insignificant.
But the Cellcept is another story. It's an anti-rejection drug, and its effectiveness for this purpose is dose dependent - more medication, less rejection. Its side effects are also dose dependent - more medication, more risk of side effects. Since one of its adverse events is neutropenia, and Babygirl HAS neutropenia, the dose has been decreased from 250 mg. in the morning and 500 mg. in the evening to 250 mg twice daily, and now to 160 mg twice daily. The smallest available pills are the 250 mg ones, so we have had to switch to liquid.
Liquid Cellcept is 200 mg. per cc. One cc is 1/5 of a teaspoon. To measure this we have 1 cc syringes - the size of an insulin syringe. She takes 0.8 cc. It is challenging to be accurate with this.
The liquid is white, and while it isn't thick, it is opaque. The first time I measured it out into 14 small syringes, I noticed that after a while I could see a pretty good sized bubble. So I set the syringes in a cup, dispensing end up so the bubble would rise. The average bubble was 0.1cc. This is a 12.5% decrease in the expected dose - 140 mg instead of 160. They already decreased her dose by over a third. This level of inaccuracy MATTERS.
In addition to that, it's been difficult to make sure the syringes of medication get taken. When it was just the Mepron, one syringe each morning, I know Babygirl forgot to take it periodically. I found one full syringe on the floor under the table the pill sorter sits on. I've had a syringe left over at the end of the week. Again, given what the medication does, I'm not too worried about the odd missed dose.
I AM worried about missed doses of anti-rejection medications.
So..... to improve compliance, I tried putting all three syringes in a plastic bag, one bag for each day. It was bulky, took up too much space on top of the pill sorter (remember, our sorter is an enormous thing the size of an old laptop), and the syringes still ended up on the floor, and we were throwing away a million little bags. So now each dose has a sticker giving day of the week and time of dose (AM/PM), and the 3 daily syringes are rubber-banded together, and the bands can be re-used. This seems effective so far.
When all we had were pills, it took less than 15 minutes to sort for a week, even when we had dozens of pills. With the syringes, and the painstaking process of removing all the bubbles, and the labels/banding/pill sorting, it takes over half an hour.
Worth it to keep her healthy, but I'll bet it's something the docs don't give even a minute's consideration to. I know I wouldn't have.
DeeDee
Saturday, September 22, 2012
Week Seventy-four - Well Enough to Be Sick.....
This week's lack of posts isn't because I have nothing to talk about. There are TONS of things going on that would make good stories:
My mom, after numerous phone calls to me (on such varied subjects as needing a cat groomer, needing a phone book, and needing faster responses to her messages) and my brother, woke him up at 1 AM because she needed assistance - with opening a can of sardines.
My office is surviving a transition in leadership. LAS - we'd miss you but we know you aren't going far! And A - good luck. You'll get used to the insanity.
Babygirl has signed up to return to the swim team after a nearly three year hiatus. We're hoping the school doc agrees that it's a GREAT idea.
My niece, after a scheduling glitch that postponed her C-section by 24 hours, was safely delivered of an absolutely BEAUTIFUL little girl.
But it's too exhausting to think about it. We've all been hit by a cold.
"Hit" may be a touch of an understatement. This thing grabbed us by the throats, rammed snot up our noses and then threw us out into bus traffic. We are all achy, sneezy, wheezy and dopey. And how, I might ask, did this cold manage to strike Citygirl when she lives four hours away?? She called while on her way, and croaked, "Is it safe for me to come home? I have a cold."
Well, aside from the fact that we may end up trading germs and surviving two completely DIFFERENT colds, yeah, it's safe. With Babygirl's neutrophil count over 1000, we're safe.
And that, despite how crappy we feel, is completely awesome.
DeeDee
My mom, after numerous phone calls to me (on such varied subjects as needing a cat groomer, needing a phone book, and needing faster responses to her messages) and my brother, woke him up at 1 AM because she needed assistance - with opening a can of sardines.
My office is surviving a transition in leadership. LAS - we'd miss you but we know you aren't going far! And A - good luck. You'll get used to the insanity.
Babygirl has signed up to return to the swim team after a nearly three year hiatus. We're hoping the school doc agrees that it's a GREAT idea.
My niece, after a scheduling glitch that postponed her C-section by 24 hours, was safely delivered of an absolutely BEAUTIFUL little girl.
But it's too exhausting to think about it. We've all been hit by a cold.
"Hit" may be a touch of an understatement. This thing grabbed us by the throats, rammed snot up our noses and then threw us out into bus traffic. We are all achy, sneezy, wheezy and dopey. And how, I might ask, did this cold manage to strike Citygirl when she lives four hours away?? She called while on her way, and croaked, "Is it safe for me to come home? I have a cold."
Well, aside from the fact that we may end up trading germs and surviving two completely DIFFERENT colds, yeah, it's safe. With Babygirl's neutrophil count over 1000, we're safe.
And that, despite how crappy we feel, is completely awesome.
DeeDee
Tuesday, September 18, 2012
It's Always Good News/Bad News.....
This morning's counts are in. Drum roll please.......
Good news first:
She has neutrophils! I was sincerely hoping for an increase, and concerned about the possibility of a decrease. I was especially NOT wanting the kind of decrease to say, 505, where technically she'd be over 500 and able to go to school, but low enough to utterly freak me out. But the count is 1005, not technically normal, but a 25% improvement over last week. It will take a couple more weeks of tests to prove this is a trend and not a fluke, but I'll take it.
And the bad news:
Her creatinine is 1.0. It's not terrible, but it is higher than the last two weeks' reassuring 0.8. Again, time will tell if this a trend or a blip, but I hate seeing UP on the creatinine almost as much as I hate seeing DOWN on the neutrophils.
We've landed in the hospital for each of those problems.
CHOP hasn't actually called yet. I got the numbers from the local doc, bless him.
DeeDee
Good news first:
She has neutrophils! I was sincerely hoping for an increase, and concerned about the possibility of a decrease. I was especially NOT wanting the kind of decrease to say, 505, where technically she'd be over 500 and able to go to school, but low enough to utterly freak me out. But the count is 1005, not technically normal, but a 25% improvement over last week. It will take a couple more weeks of tests to prove this is a trend and not a fluke, but I'll take it.
And the bad news:
Her creatinine is 1.0. It's not terrible, but it is higher than the last two weeks' reassuring 0.8. Again, time will tell if this a trend or a blip, but I hate seeing UP on the creatinine almost as much as I hate seeing DOWN on the neutrophils.
We've landed in the hospital for each of those problems.
CHOP hasn't actually called yet. I got the numbers from the local doc, bless him.
DeeDee
Monday, September 17, 2012
Subtle Changes.....
I commented yesterday about Babygirl cleaning the kitchen. The amount of work she accomplished in a short time made me think...
Last year at this time she would not have been capable of doing such a task. She was too tired, too sleep-deprived, too anemic, and too immature. It was easy to see a big energy jump immediately after the transplant - an almost overnight change to a more energetic, happier, rested child.
But aside from the distinct hyperactivity caused at times by the high dose steroids, she settled over the late spring and summer into a sort of lassitude. She watched a lot of TV, and avoided strenuous activity. When I'd go for a walk, she'd stay home, quiet. While she was certainly dramatically better than she was pre-transplant, she still wasn't quite herself.
There has been a gradual, but radical change over the last few weeks. Her energy levels have risen, her wit has sharpened, her laughter and sense of purpose have become more intense. It snuck up on us, this return to the Babygirl we remember from a few years ago. She wants to walk the dog. She wants to get out of the house. She wants to get back on the swim team.
It occurred to me that perhaps blaming her hyperactivity on the steroids was an error. If I think back, those periods of energy all correlate with creatinine levels of 0.9 or less. The fact that she hit those levels because she was on steroids the first couple of times may have been coincidental.
We are liking Rapamune. It's been nearly a month of nearly normal renal function, and she is a new kid. The possibility that the tacrolimus may have been causing some depression has crossed my mind, but logic suggests that the simplest answer is that she simply feels better when the kidney is working at its best.
DeeDee
Last year at this time she would not have been capable of doing such a task. She was too tired, too sleep-deprived, too anemic, and too immature. It was easy to see a big energy jump immediately after the transplant - an almost overnight change to a more energetic, happier, rested child.
But aside from the distinct hyperactivity caused at times by the high dose steroids, she settled over the late spring and summer into a sort of lassitude. She watched a lot of TV, and avoided strenuous activity. When I'd go for a walk, she'd stay home, quiet. While she was certainly dramatically better than she was pre-transplant, she still wasn't quite herself.
There has been a gradual, but radical change over the last few weeks. Her energy levels have risen, her wit has sharpened, her laughter and sense of purpose have become more intense. It snuck up on us, this return to the Babygirl we remember from a few years ago. She wants to walk the dog. She wants to get out of the house. She wants to get back on the swim team.
It occurred to me that perhaps blaming her hyperactivity on the steroids was an error. If I think back, those periods of energy all correlate with creatinine levels of 0.9 or less. The fact that she hit those levels because she was on steroids the first couple of times may have been coincidental.
We are liking Rapamune. It's been nearly a month of nearly normal renal function, and she is a new kid. The possibility that the tacrolimus may have been causing some depression has crossed my mind, but logic suggests that the simplest answer is that she simply feels better when the kidney is working at its best.
DeeDee
Sunday, September 16, 2012
Reading the Labels.....
I can't say I accomplished much yesterday in terms of housework. But I did coax my mom out of her house and her funk by taking her for a much-needed pedicure. She enjoyed the massage chair, which surprised me given that she doesn't really care for backrubs much. We stopped for coffee, I sorted her pills and balanced her checkbook.
I did better today. After church, Babygirl and I went to work. She volunteered to clean the kitchen. I didn't give her any special instructions about it, but as I went back and forth doing other jobs, I saw her working. And working. And working. She emptied out cupboards, wiped them down and rearranged things neatly. She disassembled the stove top and cleaned all the parts. She loaded and unloaded and REloaded the dishwasher, swept the floor and mopped it. Oh, yeah, and she cleaned the refrigerator.
I'd have been satisfied with clean counter tops and floors. I was stunned by the degree of initiative she took.
I did the living room, dining room and bathroom with a bit of miscellaneous tidying elsewhere. I also caught up on the laundry
Babygirl has quite a few new clothes. And I make it a habit to check and follow the instructions on the labels of all new clothes to make sure I don't accidentally destroy something. She loves skinny jeans, and even managed to find a pair that are reversible - hounds tooth check on one side, denim on the other.
Now for those of you (us!) who do not wear skinny jeans, I have to tell you that it is impossible to take a pair off without turning them completely inside out in the process, so they come down the laundry chute inside out. Since all their labels say that they should be washed inside out (why, I have no idea), that works out okay.
But would someone please explain to me how you wash a pair of reversible pants "inside out"?
DeeDee
I did better today. After church, Babygirl and I went to work. She volunteered to clean the kitchen. I didn't give her any special instructions about it, but as I went back and forth doing other jobs, I saw her working. And working. And working. She emptied out cupboards, wiped them down and rearranged things neatly. She disassembled the stove top and cleaned all the parts. She loaded and unloaded and REloaded the dishwasher, swept the floor and mopped it. Oh, yeah, and she cleaned the refrigerator.
I'd have been satisfied with clean counter tops and floors. I was stunned by the degree of initiative she took.
I did the living room, dining room and bathroom with a bit of miscellaneous tidying elsewhere. I also caught up on the laundry
Babygirl has quite a few new clothes. And I make it a habit to check and follow the instructions on the labels of all new clothes to make sure I don't accidentally destroy something. She loves skinny jeans, and even managed to find a pair that are reversible - hounds tooth check on one side, denim on the other.
Now for those of you (us!) who do not wear skinny jeans, I have to tell you that it is impossible to take a pair off without turning them completely inside out in the process, so they come down the laundry chute inside out. Since all their labels say that they should be washed inside out (why, I have no idea), that works out okay.
But would someone please explain to me how you wash a pair of reversible pants "inside out"?
DeeDee
Saturday, September 15, 2012
Insomnia.....
Sleep has always come easily for me. For most of my life, I've not been a worrier. I'm more of a "planner" and "doer", the one who tackles the hard stuff first and leaves the simple stuff for later if needed.
Medical residency made me sleep, well, if not better, at least more efficiently. The chronic sleep deprivation meant that I slept VERY well and very quickly whenever the opportunity arose. I never lose sleep worrying about work. If I'm stressed by something at work, I'm more likely to come home and cry it out than to ruminate about it. Even the menopause process rarely left me sleepless (although the tossing and turning associated with the hot flashes apparently woke Hubby on a regular basis, poor guy!).
There is no possible way for me to "plan" and "do" in this situation. There is no simple stuff. Basic housekeeping is stressful and complicated. Maintaining reasonable hours at work, impossible. Being a loving wife and mother, challenging. Being a loving and dutiful daughter, daunting.
While I was on the phone yesterday (for over an HOUR) seeking (and failing to find) a local pharmacy that stocked Babygirl's new medicine, I was also filling out school physical forms, writing lab orders and prescriptions, and taking three different calls from my mom, all of which involved her crying hysterically and hanging up on me. During this time, the nurses were prepping patients in rooms for my afternoon appointments, most of which I ultimately had to cancel. I saw the folks who were already there, triaged the rest of the scheduled appointments for either cancellation or immediate follow up with a colleague (whose schedule was already overbrimming), and as I was leaving took a fourth call from mom in which I had to explain why, if she needed food, she should manage her OWN shopping. This resulted in more crying and another hang up. And then the traffic-laden 150 mile run to pick up the medicine and beat the pharmacy closing time of 6 PM (it was closer than I care to think - 75 miles in 1 hour, 45 minutes, and I got on the highway at 4).
All this would probably be easier to manage if I were actually sleeping. Right now I'm managing to get about 3 good night's sleep in a week, and the rest can vary from falling asleep at 3 AM (to get up no later than 6 for work) to multiple awakenings, each lasting 10 minutes to an hour.
Frankly, I'm tired. I'm cranky. I want to sink my toes in some sand and let the sound of the ocean fill my mind.
But today is pill-sorting day, both for Babygirl and my mom. Today is clean-the-house day. BoosMommy needs to be picked up and brought over so she can do her laundry. I have to pay bills and catch the checkbook up. And it's definitely NOT relax-and-catch-a-nap day.
Anyone with suggestions for better sleep? Now's the time to speak up! I've tried melatonin and benedryl already.
DeeDee
Medical residency made me sleep, well, if not better, at least more efficiently. The chronic sleep deprivation meant that I slept VERY well and very quickly whenever the opportunity arose. I never lose sleep worrying about work. If I'm stressed by something at work, I'm more likely to come home and cry it out than to ruminate about it. Even the menopause process rarely left me sleepless (although the tossing and turning associated with the hot flashes apparently woke Hubby on a regular basis, poor guy!).
There is no possible way for me to "plan" and "do" in this situation. There is no simple stuff. Basic housekeeping is stressful and complicated. Maintaining reasonable hours at work, impossible. Being a loving wife and mother, challenging. Being a loving and dutiful daughter, daunting.
While I was on the phone yesterday (for over an HOUR) seeking (and failing to find) a local pharmacy that stocked Babygirl's new medicine, I was also filling out school physical forms, writing lab orders and prescriptions, and taking three different calls from my mom, all of which involved her crying hysterically and hanging up on me. During this time, the nurses were prepping patients in rooms for my afternoon appointments, most of which I ultimately had to cancel. I saw the folks who were already there, triaged the rest of the scheduled appointments for either cancellation or immediate follow up with a colleague (whose schedule was already overbrimming), and as I was leaving took a fourth call from mom in which I had to explain why, if she needed food, she should manage her OWN shopping. This resulted in more crying and another hang up. And then the traffic-laden 150 mile run to pick up the medicine and beat the pharmacy closing time of 6 PM (it was closer than I care to think - 75 miles in 1 hour, 45 minutes, and I got on the highway at 4).
All this would probably be easier to manage if I were actually sleeping. Right now I'm managing to get about 3 good night's sleep in a week, and the rest can vary from falling asleep at 3 AM (to get up no later than 6 for work) to multiple awakenings, each lasting 10 minutes to an hour.
Frankly, I'm tired. I'm cranky. I want to sink my toes in some sand and let the sound of the ocean fill my mind.
But today is pill-sorting day, both for Babygirl and my mom. Today is clean-the-house day. BoosMommy needs to be picked up and brought over so she can do her laundry. I have to pay bills and catch the checkbook up. And it's definitely NOT relax-and-catch-a-nap day.
Anyone with suggestions for better sleep? Now's the time to speak up! I've tried melatonin and benedryl already.
DeeDee
Friday, September 14, 2012
WHY the Heck.....
Why the heck is it that CHOP manages to call when they aren't changing anything but seems to miss us when they ARE???
We had preliminary results when we left on Monday, as usual. Because of her neutropenia, the team was going to discuss possible medication changes on Tuesday. By the end of Wednesday I had heard nothing, so on Thursday I called. The "Lab Report Line" lets you leave a message and promised to call back within two working days, so I might not hear until Monday, right?
Today they called, and they want to decrease Babygirl's mycophenylate. The only way to do this is to start a liquid, which they want to do immediately. Ummm, really?
So they fax it to our pharmacy, which does not stock it. They can get it by Tuesday. I spent an hour calling every type of pharmacy locally - Walgreens, CVS, Rite Aide, Medicine Shoppe, the local grocery pharmacies and the local hospital pharmacies and the local private pharmacies, and more than one of each type when applicable. Everybody can get it by Tuesday.
So, I cancelled my afternoon. I'm finishing paperwork, putting gas in Rhonda the Honda and hieing off to a pharmacy 75 miles away, at the University. They close at six. Wish me luck, and a ticket-free ride.
Thank GOD I take good blood pressure meds.
DeeDee
We had preliminary results when we left on Monday, as usual. Because of her neutropenia, the team was going to discuss possible medication changes on Tuesday. By the end of Wednesday I had heard nothing, so on Thursday I called. The "Lab Report Line" lets you leave a message and promised to call back within two working days, so I might not hear until Monday, right?
Today they called, and they want to decrease Babygirl's mycophenylate. The only way to do this is to start a liquid, which they want to do immediately. Ummm, really?
So they fax it to our pharmacy, which does not stock it. They can get it by Tuesday. I spent an hour calling every type of pharmacy locally - Walgreens, CVS, Rite Aide, Medicine Shoppe, the local grocery pharmacies and the local hospital pharmacies and the local private pharmacies, and more than one of each type when applicable. Everybody can get it by Tuesday.
So, I cancelled my afternoon. I'm finishing paperwork, putting gas in Rhonda the Honda and hieing off to a pharmacy 75 miles away, at the University. They close at six. Wish me luck, and a ticket-free ride.
Thank GOD I take good blood pressure meds.
DeeDee
Wednesday, September 12, 2012
Week Seventy-three - One Blessing........
We are getting into the rhythm of the school year, making time for packing lunches, going to bed earlier, getting up on time. Babygirl is enjoying school (so far) and has no concerns or complaints. There are no reports of anyone sick at school, but I'm still picking up one or two strep throats a week in the office, and we're in the same neighborhood.
Babygirl's transplant is a miracle, for sure. But I've replaced my over-the-top worrying from last fall (she's not getting enough sleep, she feels crappy, she's in pain ALL the time!) with a chronic, simmering, low-level anxiety. She doesn't have enough neutrophils. She's had this before, and last time she got very sick. She could get another mouth ulcer, and that would be a doorway directly from her germy mouth to the rest of her body. She doesn't look the same and I don't want her to be bullied.
Please, God - I just don't want her to suffer any more than she already has.
To all outward appearances she is a happy, healthy, normal little girl. And I do my very level best to make sure that my anxieties remain MINE, not hers. If she has worries I want her to be able to tell me without worrying about whether I can take more stress. It's not that she shouldn't know I'm concerned. I just don't want her to know I'm obsessed.
It's a fine line. Hubby feels it too, and we continue to keep an eye on each other for signs that one or the other of us needs a break. My recent migraine has him noticeably worried, so at least for a while, the focus is away from Babygirl LOL.
I used to think there was a limit to how long any one stressor could possibly last. I know better now. My hat is off to all of the parents out there who've been dealing with a chronically ill child! Bless the moms who are raising autistic kids. Bless the dads who hold a child's hand through chemo. Bless every parent who has ever fought a school for a child who needs something extra to succeed.
But I wouldn't change any of it, not one minute, if it meant I couldn't be Babygirl's mom. She is, without a doubt, the blessing that keeps us going.
DeeDee
Babygirl's transplant is a miracle, for sure. But I've replaced my over-the-top worrying from last fall (she's not getting enough sleep, she feels crappy, she's in pain ALL the time!) with a chronic, simmering, low-level anxiety. She doesn't have enough neutrophils. She's had this before, and last time she got very sick. She could get another mouth ulcer, and that would be a doorway directly from her germy mouth to the rest of her body. She doesn't look the same and I don't want her to be bullied.
Please, God - I just don't want her to suffer any more than she already has.
To all outward appearances she is a happy, healthy, normal little girl. And I do my very level best to make sure that my anxieties remain MINE, not hers. If she has worries I want her to be able to tell me without worrying about whether I can take more stress. It's not that she shouldn't know I'm concerned. I just don't want her to know I'm obsessed.
It's a fine line. Hubby feels it too, and we continue to keep an eye on each other for signs that one or the other of us needs a break. My recent migraine has him noticeably worried, so at least for a while, the focus is away from Babygirl LOL.
I used to think there was a limit to how long any one stressor could possibly last. I know better now. My hat is off to all of the parents out there who've been dealing with a chronically ill child! Bless the moms who are raising autistic kids. Bless the dads who hold a child's hand through chemo. Bless every parent who has ever fought a school for a child who needs something extra to succeed.
But I wouldn't change any of it, not one minute, if it meant I couldn't be Babygirl's mom. She is, without a doubt, the blessing that keeps us going.
DeeDee
Tuesday, September 11, 2012
Yesterday's Results......
Yesterday's visit with the doctor was same old/same old. Blood work. Breakfast. Weight (stable) height (unchanging) vital signs (acceptable). Dr. A came in and went over what we have available at the time of the visit:
Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be. Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected. We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed. Babygirl is, therefore, more or less done growing. That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky. Kidney disease stinks.
Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made. I know it was done, but I'm sure I never even thought about asking for those results. The kidney failure was the only thing we focused on.
Creatinine is 0.8 for the third time in a row. The kidney likes Rapamune. And so do we. A couple of mouth ulcers? No biggie.
Neutrophil count is down to about 750. Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again. Okay for school. Watch for fever. Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.
See you in two weeks. Or sooner, depending.
She feels great, so it's a good day?
DeeDee
Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be. Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected. We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed. Babygirl is, therefore, more or less done growing. That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky. Kidney disease stinks.
Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made. I know it was done, but I'm sure I never even thought about asking for those results. The kidney failure was the only thing we focused on.
Creatinine is 0.8 for the third time in a row. The kidney likes Rapamune. And so do we. A couple of mouth ulcers? No biggie.
Neutrophil count is down to about 750. Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again. Okay for school. Watch for fever. Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.
See you in two weeks. Or sooner, depending.
She feels great, so it's a good day?
DeeDee
Monday, September 10, 2012
Migraine.....
The night before last I had yet another bout of insomnia and slept about 4 hours, went to church and then drove to Philly. I remember being awake for a couple of short stretches during the night last night also. So I loaded up heavily on coffee for the drive home and handily set myself up for this:
We left the hospital a bit late, near eleven, and aimed to stop for lunch around one. We were about 45 minutes into the drive when I noticed that the car in front of me was missing its left tail light. Missing - not just a blown bulb, but the entire red glass. As I continued to evaluate the situation, the left half of the trunk hood vanished, along with the rear wheel, leaving the car apparently running smoothly on three tires with the driver's rear neatly floating above the pavement.
Migraine auras are fascinating. Even when you know that the outcome is not going to be pretty, realizing that your brain is simply rearranging visible reality is like watching an evolving episode in a good sci-fi show. The blue police box never shows up in MY neighborhood, but hey, you never know.
Keep in mind that I am driving at 70 mph on a limited access highway. To add to the insanity, I am in a construction zone with infrequent emergency pull-offs, and I can't read signs anymore anyway. I have Babygirl pull out 3 Advil, swallow them dry and hope for the best. Twenty minutes later, right on schedule, my left eyeball started to feel like it was going to explode and ooze down my aching cheekbone. I asked Babygirl to unwrap a summatriptan tablet (since migraine meds are ALL packaged in such a way that NO ONE with an actual migraine-in-progress could ever open one) and swallowed that as well.
Twenty minutes later still the summatriptan side effects kicked in - tight jaw, painful swallowing, tight chest - all without the intended benefit of taking away the damned migraine. Add to this the almost overwhelming desire to simply close my eyes and drift off to sleep....
Why in HELL, you might politely ask, did I not pull over and call 911, or at the very least exit at the first possible moment and hie myself to a hospital?
I've never had a hangover, and never had so much to drink that I was still drunk while I had one, but I imagine that that MIGHT be as close as anyone could come to the interior experience of a really whopping migraine. In my opinion migraines don't hurt so bad, really - it's no worse than a bit of repetitive hammering to the temple. With an actual ballpeen hammer. It's the mental confusion that takes over, frequently long before the migraine pain becomes the primary problem. The lack of blood flow that starts the process makes me incredibly stupid, and I seem never to remember that fact until I look back with some degree of objective horror at what I was doing at the time.
Five miles before our intended lunch location I did pull over. PA turnpike toll booths all have public restrooms (did you know that? It's an awesome feature.). I was having enough nausea (very unusual for my migraine type) that I decided to pull over and check out the bathroom. I came out, and Babygirl went in. By the time she came back to the car, I was asleep. Smart child - she let me. I woke up about 15 minutes later, and drove the remaining five miles to 'our' restaurant.
I ate a little, and when we went out to the car, I slept a little more before getting back on the highway. I foolishly lost an internal debate about whether to report to a local hospital or keep going. Entirely by the grace of God, we made it home a little over an hour later without incurring any disaster. I immediately went to bed, slept two hours, and now I'm fine.
Fine, not counting the sickening sensation of awakening to the absolutely appalling risk I took of driving so impaired. Retrospectively the risk is obvious, but while it's happening it all seems perfectly sensible to soldier on and head for home. Maybe that's why so many people actually drive while drunk - maybe it just doesn't seem like such a bad idea at the time. And for the life of me I can't figure out a way to keep it from happening.
Thank God that migraines of this magnitude are rare for me. It's almost hard to remember that I lived with this level of altered consciousness for nearly a full month two years ago.
DeeDee
We left the hospital a bit late, near eleven, and aimed to stop for lunch around one. We were about 45 minutes into the drive when I noticed that the car in front of me was missing its left tail light. Missing - not just a blown bulb, but the entire red glass. As I continued to evaluate the situation, the left half of the trunk hood vanished, along with the rear wheel, leaving the car apparently running smoothly on three tires with the driver's rear neatly floating above the pavement.
Migraine auras are fascinating. Even when you know that the outcome is not going to be pretty, realizing that your brain is simply rearranging visible reality is like watching an evolving episode in a good sci-fi show. The blue police box never shows up in MY neighborhood, but hey, you never know.
Keep in mind that I am driving at 70 mph on a limited access highway. To add to the insanity, I am in a construction zone with infrequent emergency pull-offs, and I can't read signs anymore anyway. I have Babygirl pull out 3 Advil, swallow them dry and hope for the best. Twenty minutes later, right on schedule, my left eyeball started to feel like it was going to explode and ooze down my aching cheekbone. I asked Babygirl to unwrap a summatriptan tablet (since migraine meds are ALL packaged in such a way that NO ONE with an actual migraine-in-progress could ever open one) and swallowed that as well.
Twenty minutes later still the summatriptan side effects kicked in - tight jaw, painful swallowing, tight chest - all without the intended benefit of taking away the damned migraine. Add to this the almost overwhelming desire to simply close my eyes and drift off to sleep....
Why in HELL, you might politely ask, did I not pull over and call 911, or at the very least exit at the first possible moment and hie myself to a hospital?
I've never had a hangover, and never had so much to drink that I was still drunk while I had one, but I imagine that that MIGHT be as close as anyone could come to the interior experience of a really whopping migraine. In my opinion migraines don't hurt so bad, really - it's no worse than a bit of repetitive hammering to the temple. With an actual ballpeen hammer. It's the mental confusion that takes over, frequently long before the migraine pain becomes the primary problem. The lack of blood flow that starts the process makes me incredibly stupid, and I seem never to remember that fact until I look back with some degree of objective horror at what I was doing at the time.
Five miles before our intended lunch location I did pull over. PA turnpike toll booths all have public restrooms (did you know that? It's an awesome feature.). I was having enough nausea (very unusual for my migraine type) that I decided to pull over and check out the bathroom. I came out, and Babygirl went in. By the time she came back to the car, I was asleep. Smart child - she let me. I woke up about 15 minutes later, and drove the remaining five miles to 'our' restaurant.
I ate a little, and when we went out to the car, I slept a little more before getting back on the highway. I foolishly lost an internal debate about whether to report to a local hospital or keep going. Entirely by the grace of God, we made it home a little over an hour later without incurring any disaster. I immediately went to bed, slept two hours, and now I'm fine.
Fine, not counting the sickening sensation of awakening to the absolutely appalling risk I took of driving so impaired. Retrospectively the risk is obvious, but while it's happening it all seems perfectly sensible to soldier on and head for home. Maybe that's why so many people actually drive while drunk - maybe it just doesn't seem like such a bad idea at the time. And for the life of me I can't figure out a way to keep it from happening.
Thank God that migraines of this magnitude are rare for me. It's almost hard to remember that I lived with this level of altered consciousness for nearly a full month two years ago.
DeeDee
Sunday, September 9, 2012
Travel Day.....
We've arrived safely in our Philly home. We had planned on stopping at the amusement park, but it's closed for a private party (and a BIG one to judge by the number of cars!). It's closed on weekdays now, so we'll have to wait and see about another visit before it closes for the winter.
But the story for the day....
Our church had a picnic today. The service was at a local park, under a picnic shelter, with lunch catered by a local restaurant that specializes in grilled chicken. My mom actually decided to come - food tends to bring her out. She ended up seated next to Dick, the father (-in-law) of a couple of our friends.
They hit it off well. He told her the same three stories 8 times each and she thought each one was a new and different story. Dementia Kismet, if you will. As we were leaving the park, my mom started to cry. She lamented the loss of married life - someone to make tea for, someone who valued her skills. She and my dad have been divorced now longer than the 25 years they were married, and I suspect that they both miss each other. Each willingly admits that the years when my brothers and I were young were the best of their lives.
She asked if Dick was married. He was widowed a few years ago. My mom then went on to tell me that she'd happily marry him, since he's single.
I didn't know whether to laugh or cry - the mental picture of two demented old people just made it hard to avoid doing either thing. Would either of them remember that they were married? Would it be like '50 First Dates' every morning? Would we need to make videotapes every day?
Maybe the videotape thing would be a good idea......
Sigh. I can't wait to see the look on my friends' faces when I tell them her scheme LOLOL.
Last year after this picnic I ended up taking Babygirl to the emergency room. (http://kidneedsakidney.blogspot.com/2011/07/week-9-er.html). This time she played, ran around, ate, drank, and came home pain-free.
It's a good day.
DeeDee
But the story for the day....
Our church had a picnic today. The service was at a local park, under a picnic shelter, with lunch catered by a local restaurant that specializes in grilled chicken. My mom actually decided to come - food tends to bring her out. She ended up seated next to Dick, the father (-in-law) of a couple of our friends.
They hit it off well. He told her the same three stories 8 times each and she thought each one was a new and different story. Dementia Kismet, if you will. As we were leaving the park, my mom started to cry. She lamented the loss of married life - someone to make tea for, someone who valued her skills. She and my dad have been divorced now longer than the 25 years they were married, and I suspect that they both miss each other. Each willingly admits that the years when my brothers and I were young were the best of their lives.
She asked if Dick was married. He was widowed a few years ago. My mom then went on to tell me that she'd happily marry him, since he's single.
I didn't know whether to laugh or cry - the mental picture of two demented old people just made it hard to avoid doing either thing. Would either of them remember that they were married? Would it be like '50 First Dates' every morning? Would we need to make videotapes every day?
Maybe the videotape thing would be a good idea......
Sigh. I can't wait to see the look on my friends' faces when I tell them her scheme LOLOL.
Last year after this picnic I ended up taking Babygirl to the emergency room. (http://kidneedsakidney.blogspot.com/2011/07/week-9-er.html). This time she played, ran around, ate, drank, and came home pain-free.
It's a good day.
DeeDee
Shaving.....
Among the many things that transplant patients need to think about are the many potential sources of infection. Some are obvious: Don't clean the cat box. Some are clear when you think about it: No raw veggies, scrub all the fruit. Some seem a bit obscure: No cold cuts. Babygirl and I have had plenty of talks about all of these. But today we tackled a tougher issue.
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Saturday, September 8, 2012
Stories....
Our day here always gives us something to ponder, wonder or laugh at. I've been fortunate enough to have lived a life with travel, family, college and friends - to the extent that it seems I always have a story to tell! A recent post at Single Dad Laughing (http://www.danoah.com/2012/09/those-who-live-life-will-always-have-stories-to-tell.html) discusses the fact that all of us who actually live our lives (as opposed to vicariously living through TV and video games!) will always run into a story.
I think that it IS about living, about being present in your own life. To me, though, it is also about noticing that there is a story being told. As Babygirl's Mom, I could truly become inured to the peculiarities of her mind and heart. The enemy of the story is the underlying belief that nothing that we do is of any interest to anyone else. The enemy of the story is coming to think that you or your kid are 'average' and 'uninteresting.'
I don't think I've ever met a person whose story wasn't amazing in some way. But I think that we've become out of practice at telling stories. We've lost the gift of HEARING stories. We forget to truly listen for those belly-laughing, heart-wrenching, adrenal-squeezing stories that are truly, truly truly the most amazing parts of our everyday lives.
Every 'ordinary' life is full of stories. I have told my children regularly that only unintelligent people are ever bored, but I think I got it wrong. Only unimaginative people are ever bored. And more to the point, whenever I think that what is happening inside my own mind is more important than what is going on with the people around me? When I am at my most selfish? Then I am most likely to fail to see all that is beautiful, holy, joyful and laughable in the world around me.
So today I will make a conscious effort to SEE. To be where I am, to be with my family and loved ones. To hear the stories. To rejoice in the storms, to cry with the grieving, to remember that each person I meet has something awesome to teach me if I'm willing to learn.
I want to come home with a new story.
DeeDee
I think that it IS about living, about being present in your own life. To me, though, it is also about noticing that there is a story being told. As Babygirl's Mom, I could truly become inured to the peculiarities of her mind and heart. The enemy of the story is the underlying belief that nothing that we do is of any interest to anyone else. The enemy of the story is coming to think that you or your kid are 'average' and 'uninteresting.'
I don't think I've ever met a person whose story wasn't amazing in some way. But I think that we've become out of practice at telling stories. We've lost the gift of HEARING stories. We forget to truly listen for those belly-laughing, heart-wrenching, adrenal-squeezing stories that are truly, truly truly the most amazing parts of our everyday lives.
Every 'ordinary' life is full of stories. I have told my children regularly that only unintelligent people are ever bored, but I think I got it wrong. Only unimaginative people are ever bored. And more to the point, whenever I think that what is happening inside my own mind is more important than what is going on with the people around me? When I am at my most selfish? Then I am most likely to fail to see all that is beautiful, holy, joyful and laughable in the world around me.
So today I will make a conscious effort to SEE. To be where I am, to be with my family and loved ones. To hear the stories. To rejoice in the storms, to cry with the grieving, to remember that each person I meet has something awesome to teach me if I'm willing to learn.
I want to come home with a new story.
DeeDee
Friday, September 7, 2012
Week Seventy-two - First Day Of School.....
The first week of school is always a bit hectic. In the office, there is a sudden rush of school physicals. New state rules bring a flurry of impatient calls from moms whose kindergarteners and sixth graders need vaccines to even get in on the first day. The fact that these kids aren't up-to-date appears to be MY fault despite the fact that those vaccines WOULD have been given if mom had made/showed up for the child's most recent physical appointment! And for those who did have physicals done, the moms need that translated onto a school form - a different form for each local school (a process which is getting better since our state recently issued a standardized form!).
Clothes. Shoes. Supplies according to the published list. Lunches. Pony tail holders. New earrings (moustaches to go with the ongoing Paris theme). Shop for more supplies based on the TEACHERS' lists.
So last night we went out to brave the crowds of parents and kids who are all in the same boat we are. We had dinner at 5 Guys, a special treat usually reserved for the 5 Guys restaurant at the beach. And as always, we discussed how our day went.
Babygirl went on at excited length about her new teachers, her new classrooms, and her friends. But talking to Babygirl requires careful listening, and occasional mental translation, since she apparently learned to speak English at the feet of Miss Malaprop:
"MOM! There's a new teacher! No! He's an aide. And he wears SPANDEX to school!"
Well. This is, indeed, news. Hubby and I pause, each of us with mental pictures of a male teachers' aide in Spandex. He either looks REALLY good or VERY bad, and either way, it seems....inappropriate. Especially for a middle school. Um....."Spandex? On the bottom or on top?" I mean, a Spandex shirt wouldn't be quite as bad, right? Either way, I might be calling the school.
Puzzled silence. "Well, they're on top mostly....."
Thoughtful mental translation. "Do you mean suspenders?"
Of course she did. Black suspenders. She'll keep us updated if the color changes.
Oh. My. My sides hurt and I have cramps in my cheeks. I LOVE being a mom!
DeeDee
Clothes. Shoes. Supplies according to the published list. Lunches. Pony tail holders. New earrings (moustaches to go with the ongoing Paris theme). Shop for more supplies based on the TEACHERS' lists.
So last night we went out to brave the crowds of parents and kids who are all in the same boat we are. We had dinner at 5 Guys, a special treat usually reserved for the 5 Guys restaurant at the beach. And as always, we discussed how our day went.
Babygirl went on at excited length about her new teachers, her new classrooms, and her friends. But talking to Babygirl requires careful listening, and occasional mental translation, since she apparently learned to speak English at the feet of Miss Malaprop:
"MOM! There's a new teacher! No! He's an aide. And he wears SPANDEX to school!"
Well. This is, indeed, news. Hubby and I pause, each of us with mental pictures of a male teachers' aide in Spandex. He either looks REALLY good or VERY bad, and either way, it seems....inappropriate. Especially for a middle school. Um....."Spandex? On the bottom or on top?" I mean, a Spandex shirt wouldn't be quite as bad, right? Either way, I might be calling the school.
Puzzled silence. "Well, they're on top mostly....."
Thoughtful mental translation. "Do you mean suspenders?"
Of course she did. Black suspenders. She'll keep us updated if the color changes.
Oh. My. My sides hurt and I have cramps in my cheeks. I LOVE being a mom!
DeeDee
Tuesday, September 4, 2012
End of Summer.....
It always amazes me how my view and Babygirl's differ regarding how she's doing and how she feels. I look back at this summer and I think, "Man, this was easier than LAST summer."
Last summer we were learning to deal with a chronically ill child. Last summer we hit the ER for an episode of painful dehydration. Last summer our beach vacation was interrupted daily by appalling bad news and medical updates. Last summer we watched Babygirl begin her ongoing, agonizing stint on dialysis. Last summer we gave up sleep for a month.
Yup, this was a better summer.
Now swing to Babygirl's perspective. We didn't go to the beach. She didn't go to church camp. We spent horseback camp week in the hospital. Her best friend was out of town for amusement park day. She got to enjoy all of those things last summer, so she sees THIS summer as a bit of a drag. Besides, if you've already been out of school for two months before vacation begins, what fun is being off MORE?
Yup, last summer was better.
DeeDee
Last summer we were learning to deal with a chronically ill child. Last summer we hit the ER for an episode of painful dehydration. Last summer our beach vacation was interrupted daily by appalling bad news and medical updates. Last summer we watched Babygirl begin her ongoing, agonizing stint on dialysis. Last summer we gave up sleep for a month.
Yup, this was a better summer.
Now swing to Babygirl's perspective. We didn't go to the beach. She didn't go to church camp. We spent horseback camp week in the hospital. Her best friend was out of town for amusement park day. She got to enjoy all of those things last summer, so she sees THIS summer as a bit of a drag. Besides, if you've already been out of school for two months before vacation begins, what fun is being off MORE?
Yup, last summer was better.
DeeDee
Sunday, September 2, 2012
Miracles R Us......
Maintaining a fleet of elderly cars is, in many ways, more cost-effective than purchasing a new vehicle. Hubby and I review the numbers periodically, and always come to the conclusion that until we can save a few thousand bucks and pay for a newer used car, we are better off limping along with our two sweethearts, Rhonda and the Goose. Both will hold a large number of people (seven and eight, respectively), and both are relatively low mileage for their ages (18 and 8, respectively). And because they are old, the insurance is a deal.
But every now and then you get one of those runs of bad car Karma that make you shake your head and wonder if this is actually the best plan.
Both cars needed air conditioning repairs AND new starters this summer. Rhonda has needed an assortment of minor things from light bulbs to tires and to a new windshield (that one, at least, was covered by insurance). The recent electrical outage was an affordable alternator replacement. While Hubby was picking Rhonda up from the shop from THAT repair, we were merrily driving off in the Goose toward an amusement park.
Twenty minutes after Hubby drove away from the mechanic, he stopped at Walmart. When he came out and began to drive, the brakes failed ENTIRELY at the first stop sign in the lot. He's a quick thinker, thank God, and he managed to corner quickly without hitting anyone or anything and drifted to a stop. One tow truck ride to the mechanic later, it was discovered that the master brake cylinder had failed. Aside from the cost, there is the pure terror factor.
We could have fit everyone into Rhonda for the trip down. The only real reason we needed the extra seating was because of my nephew's car crash - we needed to be able to give him and his sister a ride to and from the park instead of having them drive themselves. Twenty minutes down the road in the direction we were going would have been on the highway, going 70 mph.
We could easily have died - me, Babygirl, the grandkids, all of us.
Hubby is still having trouble sleeping.
DeeDee
But every now and then you get one of those runs of bad car Karma that make you shake your head and wonder if this is actually the best plan.
Both cars needed air conditioning repairs AND new starters this summer. Rhonda has needed an assortment of minor things from light bulbs to tires and to a new windshield (that one, at least, was covered by insurance). The recent electrical outage was an affordable alternator replacement. While Hubby was picking Rhonda up from the shop from THAT repair, we were merrily driving off in the Goose toward an amusement park.
Twenty minutes after Hubby drove away from the mechanic, he stopped at Walmart. When he came out and began to drive, the brakes failed ENTIRELY at the first stop sign in the lot. He's a quick thinker, thank God, and he managed to corner quickly without hitting anyone or anything and drifted to a stop. One tow truck ride to the mechanic later, it was discovered that the master brake cylinder had failed. Aside from the cost, there is the pure terror factor.
We could have fit everyone into Rhonda for the trip down. The only real reason we needed the extra seating was because of my nephew's car crash - we needed to be able to give him and his sister a ride to and from the park instead of having them drive themselves. Twenty minutes down the road in the direction we were going would have been on the highway, going 70 mph.
We could easily have died - me, Babygirl, the grandkids, all of us.
Hubby is still having trouble sleeping.
DeeDee
Saturday, September 1, 2012
Happy Birthday.......
Babygirl is a teenager!
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
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