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
Saturday, September 29, 2012
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
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