I had mentioned, nearly a month ago, that Babygirl and I were going to attempt to de-clutter the attic. What with one thing and another, we finally started work on it yesterday. To understand the general complexity of the process, an overview of the layout may be in order.
Our third floor is finished, mostly. There are nearly 300 square feet of space tucked under the roof with four foot knee walls. There are two good-sized walk in closets leading to attic accesses behind the knee walls, one on each side of the house. These spaces are as long as the house and go around the corners, front and back. They are truly accessible only to someone who is not afraid of dirt, and who is able to kneel and crawl. Generally speaking, one side is for me, the kids, and holiday stuff. The other, Hubby.
Since Curlygirl, Squeaker and SqueakersDaddy moved out nearly two years ago, the third floor has become the attic again. Anything not needed much or often has landed up there. There are boxes of things that I packed up off the shelves in what is now Mom's living room that I haven't put out on our 'new' side of the house, largely because china doodads and toddler grandchildren do not mix well. Some boxes haven't been unpacked since we moved here twelve years ago. There are things belonging to Citygirl, Curlygirl, JuJuBee and my nephew. Our camping gear, suitcases and ski equipment are strewn around everywhere. The Christmas stuff never went back behind the knee wall - it's still parked in the room.
Babygirl wants to move up there. Who wouldn't - the space is fantastic. There are two large dormers with beautiful windows. It could use some paint, and some flooring, but it's truly a great teen space.
Yesterday we put in three hours of heavy labor. I went into 'my' behind-the-knee wall space and cleared out a bunch of useless junk, organizing leftover stuff into general areas so each persons' collection of crap is generally all in one area. Babygirl gathered up holiday stuff and shoved it in so I could put that all away. We put all the suitcases in one spot, out of the way, for placement in a closet, as space becomes available. We sorted boxes, organizing six for donation to the church rummage sale, with two bags of clothing for donation and two bags of trash.
Lent has been in progress for 22 days (Sundays don't count - did you know that?). If we are aiming for Forty Bags in Forty Days we are about twelve bags behind. We are going to need hubby to kick this up a notch since there is a LOT of his stuff up there. The next biggest contributor to the 'stuff' collection is Citygirl, and she's not here to defend her territory, so I'm going gently there and working on storage rather than removal. My nephew is still in school, so I think I am stuck with the chain mail, greaves, and telescope for a time.
Does organizing someone else's stuff and putting it where you can't see it count as removing it? If so, we are a LOT less behind in the project! Maybe we'll manage a couple of hours there tonight.
DeeDee
Sunday, March 30, 2014
Thursday, March 27, 2014
The Day-to-Day Grind.....
We continue the daily struggle of getting Babygirl to school. We win about half the time. I honestly can't look at her and say she isn't in too much pain for school. We are taking away electronics when she's home. We are pushing her to do more school work at home (she is WAY ahead of her classmates in English - she's read nearly all of To Kill a Mockingbird and they are still on the third chapter. This is one of those seasons where it just feels like we are grinding away for survival.
We recently got an interim report card. It was incredibly depressing. She is passing her core courses with B's and C's - English, Global Studies, Math and Science. Her gym and technology teachers both note that her "attendance is affecting grades". And her AIS Math and English classes both have "Fail" listed as her grade.
This sort of thing makes my blood boil, smoke come out of my ears and bad words out of my mouth. The kid as an IEP (Individual Education Plan) that is SUPPOSED to protect her from all of that fallout. Gym is supposed to give her written assignments to do when she is out. Technology is supposed to assess whether she 'gets' the point of the project if she can't finish it and grade on understanding rather that attendance. And AIS is her academic support class! If a kid is failing THAT, aren't they failing HER? I made a bajillion phone calls last week but have had not time since to push it all through. It is just ugly. And depressing.
She goes to high school next year. She has the school's academic catalog and is eagerly perusing arts electives. She wants to take guitar and theater. She's looking for something bigger than herself to be a part of in school. I'm thrilled that she's looking, stunned that she still has that hope within her when I just want to throw up my hands at the school and just say, "Screw it all! It's hopeless and you morons are never going to get it!"
I cannot lose faith. As long as Babygirl has bright-eyed plans for a better year next year, I'll keep pushing both her and the school.
DeeDee
We recently got an interim report card. It was incredibly depressing. She is passing her core courses with B's and C's - English, Global Studies, Math and Science. Her gym and technology teachers both note that her "attendance is affecting grades". And her AIS Math and English classes both have "Fail" listed as her grade.
This sort of thing makes my blood boil, smoke come out of my ears and bad words out of my mouth. The kid as an IEP (Individual Education Plan) that is SUPPOSED to protect her from all of that fallout. Gym is supposed to give her written assignments to do when she is out. Technology is supposed to assess whether she 'gets' the point of the project if she can't finish it and grade on understanding rather that attendance. And AIS is her academic support class! If a kid is failing THAT, aren't they failing HER? I made a bajillion phone calls last week but have had not time since to push it all through. It is just ugly. And depressing.
She goes to high school next year. She has the school's academic catalog and is eagerly perusing arts electives. She wants to take guitar and theater. She's looking for something bigger than herself to be a part of in school. I'm thrilled that she's looking, stunned that she still has that hope within her when I just want to throw up my hands at the school and just say, "Screw it all! It's hopeless and you morons are never going to get it!"
I cannot lose faith. As long as Babygirl has bright-eyed plans for a better year next year, I'll keep pushing both her and the school.
DeeDee
Friday, March 21, 2014
Spilled Pills......
Keeping medications up-to-date and organized is an ongoing trial. I try hard to fill two weeks' worth of pill boxes at at time for Babygirl (I do a month at a time for my Mom and I). I'm limited to two weeks with Babygirl's meds because her transplant-related medications can only be doled out one month at a time, unlike our usual three-month supply on everything else. I call them in ahead of time - sometimes too far ahead.
Last week was a 'too far ahead' week, so the pharmacy didn't fill a couple of important scripts and I forgot to call back and remind them. Then Hubby forgot to go get them. And then I forgot to remind him. And THEN we had to go to Philly. So.....
On Monday morning I had our docs call in three days' worth of two transplant medications to the pharmacy at CHOP. Since our refills were already filled and insurance-paid for at home, our insurance wouldn't cover the extra pills (they will eventually). When I picked them up, the total was $188. For three days' worth of only two of the many medications she takes daily. $188. That would be $1880/month just for those two medications.
Gulp.
Back at home on Wednesday, I picked up the rest of the meds and sorted two weeks of pills. We spent the weekend at church for our Mission Team retreat, and on Sunday evening, Babygirl reached into the cupboard, and knocked a nearly-full sorter to the ground. The scatter was impressive.
It has been repetitively drilled into us to keep every thing clean. Up until now, any pill that hit the floor was immediately discarded and replaced. But.....$188. We picked up all the pills. We'd been gone all weekend and the housekeeper had just cleaned while we were gone, and we didn't see any dust.....so I put them all in a baggie for further consideration. I probably would have just chucked them, but two days later, she did it AGAIN. And this time the floor wasn't quite as clean. The pills went into a different bag, labeled so I'd know which were which, and I gave it all some thought. When it came time for me to refill the pill sorter this morning, I had to make a decision. We were out of a couple of things - it was use some of the spilled pills or skip doses.
I threw out the entire second bag, the one from the dirtier floor. I threw out all of the pills we get in three month supplies, because it's easier to finagle spares. And I was left with 66 anti-rejection pills. $376.
I put them in the sorter.
I am a bad mom.
Okay, I know it was a tough choice, and for at least today there was absolutely no other choice. I can still go pick up the new bottles and get rid of the (potentially) dirty pills. The risk of infection is small, but if it happens it will be a big infection, y'know what I mean?
I'm really, really missing the five-second rule.
DeeDee
Last week was a 'too far ahead' week, so the pharmacy didn't fill a couple of important scripts and I forgot to call back and remind them. Then Hubby forgot to go get them. And then I forgot to remind him. And THEN we had to go to Philly. So.....
On Monday morning I had our docs call in three days' worth of two transplant medications to the pharmacy at CHOP. Since our refills were already filled and insurance-paid for at home, our insurance wouldn't cover the extra pills (they will eventually). When I picked them up, the total was $188. For three days' worth of only two of the many medications she takes daily. $188. That would be $1880/month just for those two medications.
Gulp.
Back at home on Wednesday, I picked up the rest of the meds and sorted two weeks of pills. We spent the weekend at church for our Mission Team retreat, and on Sunday evening, Babygirl reached into the cupboard, and knocked a nearly-full sorter to the ground. The scatter was impressive.
It has been repetitively drilled into us to keep every thing clean. Up until now, any pill that hit the floor was immediately discarded and replaced. But.....$188. We picked up all the pills. We'd been gone all weekend and the housekeeper had just cleaned while we were gone, and we didn't see any dust.....so I put them all in a baggie for further consideration. I probably would have just chucked them, but two days later, she did it AGAIN. And this time the floor wasn't quite as clean. The pills went into a different bag, labeled so I'd know which were which, and I gave it all some thought. When it came time for me to refill the pill sorter this morning, I had to make a decision. We were out of a couple of things - it was use some of the spilled pills or skip doses.
I threw out the entire second bag, the one from the dirtier floor. I threw out all of the pills we get in three month supplies, because it's easier to finagle spares. And I was left with 66 anti-rejection pills. $376.
I put them in the sorter.
I am a bad mom.
Okay, I know it was a tough choice, and for at least today there was absolutely no other choice. I can still go pick up the new bottles and get rid of the (potentially) dirty pills. The risk of infection is small, but if it happens it will be a big infection, y'know what I mean?
I'm really, really missing the five-second rule.
DeeDee
Wednesday, March 12, 2014
Rent........
I had the privilege of watching my niece's high school production of the musical 'Rent'. I knew the general story - AIDS in the '80's, ACT UP, and the incredible losses of that era - but I had never seen it. We're watching the movie now, and honestly the high school kids nailed it, maybe more so than the movie. They were able to display an incredible range of emotion. They are too young to have any memory of the horror of those days. But I do.
As an AIDS support group in the movie sings, "Will I lose my dignity? Will someone care?" I see those who had lost all dignity in the face of suffering, whose families refused to see them for no other reason than the fact that they had AIDS.
During the scene where Angel dies, I see faces. Faces I haven't seen since 1987. Dozens of faces. The faces of those whose hands I held. Faces, eyes closing in death no matter what I did, no matter how hard we fought together for life, no matter what they were leaving behind. Flashbacks, flickering from face to face to face - so many. So, so many.
I've been a doctor for over 25 years. I lost more patients to AIDS in New York City in one year than I have lost altogether since then from everything else put together. Doctors are trained to compartmentalize. We deal with the horror of the moment, pack it tightly in a box and move on. There was one week where I signed four death certificates a day, every day; and very, very few days where there weren't any. It is rare for me to let that box open, to see those faces, to feel those feelings. But there are very, very few times in my life that I can see with such photographic clarity; hear with full theatre surround sound; smell more vividly than spring lilacs.
DeeDee
As an AIDS support group in the movie sings, "Will I lose my dignity? Will someone care?" I see those who had lost all dignity in the face of suffering, whose families refused to see them for no other reason than the fact that they had AIDS.
During the scene where Angel dies, I see faces. Faces I haven't seen since 1987. Dozens of faces. The faces of those whose hands I held. Faces, eyes closing in death no matter what I did, no matter how hard we fought together for life, no matter what they were leaving behind. Flashbacks, flickering from face to face to face - so many. So, so many.
I've been a doctor for over 25 years. I lost more patients to AIDS in New York City in one year than I have lost altogether since then from everything else put together. Doctors are trained to compartmentalize. We deal with the horror of the moment, pack it tightly in a box and move on. There was one week where I signed four death certificates a day, every day; and very, very few days where there weren't any. It is rare for me to let that box open, to see those faces, to feel those feelings. But there are very, very few times in my life that I can see with such photographic clarity; hear with full theatre surround sound; smell more vividly than spring lilacs.
DeeDee
Tuesday, March 11, 2014
Anxiety.....
We've just arrived 'home' from the Adolescent Clinic. It's a complex clinic - blood work and docs and social workers and pharmacologists and nurse practitioners and psychologists. It was that last group I was most wanting to see.
I gave our NP a heads up on how things have been going with school attendance, Babygirl's aches and pains and the missed medications. It's pretty impressive how mentioning missed meds gets everybody's FULL attention.
While I was off filling in the social worker and asking for advice (and using up all the tissues in the box in the room), the psychologists were concentrating on Babygirl. My concern was that she could be depressed, which is a very bad thing indeed when one considers that there is one death by suicide every 14 minutes in the US. And my next concern was, what the heck next? How do I deal with what is clearly not limited to a physical problem?
Up until December, I'd have said that Babygirl did not stay home from school for any but the best reasons, and that her honest feeling was that she'd rather be with people at school than alone at home. But the past two months have had me increasingly concerned about her voluntary isolation: Her tendency to remain in her room even when her dad and I are home.
I'm guessing from the team's response that she is not entirely unique. Pain and sickness lead to isolation and fear of pain and isolation and....it just cycles. Getting kids to return to school when they know they are going to be in pain is a tremendous challenge. They were pleased that we'd already clamped down and made her go, and even more pleased that we'd been tough with the school nurse - they don't want her to go to school to hide in the nurse's office.
So they told her that she HAS to go to school, even if it hurts. That if she pushes through the pain, it will get better. They explained that her anxiety about the pain is making the pain worse. They also told me that they think she is 'school-avoidant' and that the anxiety could escalate to the point where she won't go if we don't start making her (which was pretty much what I was thinking when I freaked out on her last week). They want us to confiscate her Nook and her iPod if she does stay home. They want her to hook up with a local counselor (easy enough - we know a good one) and to see if there is anything we can do to support her socially, which seems easier said than done.
Overall it was a productive visit. Oh, and her labs are okay except apparently we were supposed to be giving her more bicarbonate than we have been.
Tomorrow she participates in a study on cognitive function in chronic kidney disease, and then we come home.
DeeDee
I gave our NP a heads up on how things have been going with school attendance, Babygirl's aches and pains and the missed medications. It's pretty impressive how mentioning missed meds gets everybody's FULL attention.
While I was off filling in the social worker and asking for advice (and using up all the tissues in the box in the room), the psychologists were concentrating on Babygirl. My concern was that she could be depressed, which is a very bad thing indeed when one considers that there is one death by suicide every 14 minutes in the US. And my next concern was, what the heck next? How do I deal with what is clearly not limited to a physical problem?
Up until December, I'd have said that Babygirl did not stay home from school for any but the best reasons, and that her honest feeling was that she'd rather be with people at school than alone at home. But the past two months have had me increasingly concerned about her voluntary isolation: Her tendency to remain in her room even when her dad and I are home.
I'm guessing from the team's response that she is not entirely unique. Pain and sickness lead to isolation and fear of pain and isolation and....it just cycles. Getting kids to return to school when they know they are going to be in pain is a tremendous challenge. They were pleased that we'd already clamped down and made her go, and even more pleased that we'd been tough with the school nurse - they don't want her to go to school to hide in the nurse's office.
So they told her that she HAS to go to school, even if it hurts. That if she pushes through the pain, it will get better. They explained that her anxiety about the pain is making the pain worse. They also told me that they think she is 'school-avoidant' and that the anxiety could escalate to the point where she won't go if we don't start making her (which was pretty much what I was thinking when I freaked out on her last week). They want us to confiscate her Nook and her iPod if she does stay home. They want her to hook up with a local counselor (easy enough - we know a good one) and to see if there is anything we can do to support her socially, which seems easier said than done.
Overall it was a productive visit. Oh, and her labs are okay except apparently we were supposed to be giving her more bicarbonate than we have been.
Tomorrow she participates in a study on cognitive function in chronic kidney disease, and then we come home.
DeeDee
Monday, March 10, 2014
Pack(rat)ing....
It's been quite a while since we had to come to Philly anticipating more than an overnight stay. I can pack for a weekend in a tote bag, but five days requires a bit more thought. Of course, I never come here without a couple extra days' worth of stuff, because we don't always get what we anticipate anyway, right?
I have a bag that always comes along. It has some toiletries, a deck of cards, some spare hair ties, and....who knows what else. The last time I really needed it was in November of 2012, and I can honestly say that while I've pitched it into my bag several times since then, I haven't checked the contents at all. While I was packing this time, I picked it up to throw it in with my stuff and thought.....wait. This thing is heavy - let me see if I can pare it down.....
I dumped it on my bed and found:
Three expired albuterol inhalers, the best of which was only 4 months out of date.
A full-sized bottle of shampoo.
Ditto for conditioner.
Deck of cards.
Migraine meds, expired.
Antihistamines.
Motion sickness pills.
Melatonin.
Hair ties, two new packages (about 75, total)
Gum - one sealed pack, one very stale open pack.
Hair spray, sample size.
Comb.
Toothbrush.
Dental floss.
Toothpaste, sample size.
Body wash, sample size.
Lotion, sample size.
Tylenol in a small Ziploc bag, age unknown.
Advair inhaler, expired.
Nasacort inhaler, expired.
Loose change, about $5 worth.
Two different types of lip balm.
Three new razors.
Packet of pen needles.
Manicure set.
Disposable toothbrushes.
There was one glaring omission: No deodorant.
Now, you also need to know that gathering dust on the towel rack in my sister-in-law's bathroom there is a shaving kit. It's been hanging there since February of 2012. It contains:
Folding brush with mirrored handle.
Deodorant (see, I'm covered).
Hand sanitizer sample.
Comb.
Toothbrush (two of them, actually).
Toothpaste, sample size.
Dental floss.
Bar soap sample.
Emery board.
Biological Odor Eliminator (two bottles - it came with the kit, okay? LOL)
Pad and pen
Deck of cards.
Hair gel.
Chapstick.
Adhesive remover wipes (leftover from dialysis days)
Wrench (one of the tiny fake ones that comes to assemble pre-cut furniture?)
Lordy.
I also have a drawer at my sis-in-law's that has some spare undies, t-shirts and jammie pants. I think I kinda get why hoarders hoard.
There is a reason for this pack-rattery behavior. Each successive hospitalization that we went through with Babygirl reinforced to me the idea that I am woefully unprepared. Unprepared for a sleepover. Unprepared for a lengthy stay. Unprepared for emergencies. Unprepared to be Mom to a kid whose life will never, ever again resemble anything 'normal'. These bags are tangible efforts to control the uncontrollable. There is nothing to fear but fear itself and the lack of a good toothbrush, right? Like Steve Martin, "All I need is this lamp....and my dog....." Yeah.
If all that stands between me and chaos is a bag of toiletries, then it had better be a kick-ass bag, right? Nothing bad can happen to Babygirl if I just have the right hand lotion? Enough Chapstick? A freaking nail clipper??
All of our illusions of control are just that - illusions. We can cocoon ourselves is a clean house, keep up with school and tutors, and be able to throw on our Supermom cape and tights at a moment's notice and grab our kick-ass toiletries bag, but not one of those things alters the reality of our life: We. Have. No. Control. Ever.
Patients often tell me that they don't want certain tests because they are afraid of the potential results. I always tell them, "The test doesn't change what you HAVE. It only changes what you KNOW."
Having a sick child is like this. I never had any control over anything before I found out she was sick. I just didn't know it.
DeeDee
I have a bag that always comes along. It has some toiletries, a deck of cards, some spare hair ties, and....who knows what else. The last time I really needed it was in November of 2012, and I can honestly say that while I've pitched it into my bag several times since then, I haven't checked the contents at all. While I was packing this time, I picked it up to throw it in with my stuff and thought.....wait. This thing is heavy - let me see if I can pare it down.....
I dumped it on my bed and found:
Three expired albuterol inhalers, the best of which was only 4 months out of date.
A full-sized bottle of shampoo.
Ditto for conditioner.
Deck of cards.
Migraine meds, expired.
Antihistamines.
Motion sickness pills.
Melatonin.
Hair ties, two new packages (about 75, total)
Gum - one sealed pack, one very stale open pack.
Hair spray, sample size.
Comb.
Toothbrush.
Dental floss.
Toothpaste, sample size.
Body wash, sample size.
Lotion, sample size.
Tylenol in a small Ziploc bag, age unknown.
Advair inhaler, expired.
Nasacort inhaler, expired.
Loose change, about $5 worth.
Two different types of lip balm.
Three new razors.
Packet of pen needles.
Manicure set.
Disposable toothbrushes.
There was one glaring omission: No deodorant.
Now, you also need to know that gathering dust on the towel rack in my sister-in-law's bathroom there is a shaving kit. It's been hanging there since February of 2012. It contains:
Folding brush with mirrored handle.
Deodorant (see, I'm covered).
Hand sanitizer sample.
Comb.
Toothbrush (two of them, actually).
Toothpaste, sample size.
Dental floss.
Bar soap sample.
Emery board.
Biological Odor Eliminator (two bottles - it came with the kit, okay? LOL)
Pad and pen
Deck of cards.
Hair gel.
Chapstick.
Adhesive remover wipes (leftover from dialysis days)
Wrench (one of the tiny fake ones that comes to assemble pre-cut furniture?)
Lordy.
I also have a drawer at my sis-in-law's that has some spare undies, t-shirts and jammie pants. I think I kinda get why hoarders hoard.
There is a reason for this pack-rattery behavior. Each successive hospitalization that we went through with Babygirl reinforced to me the idea that I am woefully unprepared. Unprepared for a sleepover. Unprepared for a lengthy stay. Unprepared for emergencies. Unprepared to be Mom to a kid whose life will never, ever again resemble anything 'normal'. These bags are tangible efforts to control the uncontrollable. There is nothing to fear but fear itself and the lack of a good toothbrush, right? Like Steve Martin, "All I need is this lamp....and my dog....." Yeah.
If all that stands between me and chaos is a bag of toiletries, then it had better be a kick-ass bag, right? Nothing bad can happen to Babygirl if I just have the right hand lotion? Enough Chapstick? A freaking nail clipper??
All of our illusions of control are just that - illusions. We can cocoon ourselves is a clean house, keep up with school and tutors, and be able to throw on our Supermom cape and tights at a moment's notice and grab our kick-ass toiletries bag, but not one of those things alters the reality of our life: We. Have. No. Control. Ever.
Patients often tell me that they don't want certain tests because they are afraid of the potential results. I always tell them, "The test doesn't change what you HAVE. It only changes what you KNOW."
Having a sick child is like this. I never had any control over anything before I found out she was sick. I just didn't know it.
DeeDee
Sunday, March 9, 2014
Year Three, Week Fifty - Scheduling......
It is no secret that I consider Children's Hospital of Philadelphia to be the greatest hospital, ever. If you have to have hard times, you should have them in the best place possible, right? This post comes under the "there's always room for improvement" category, though. Because no one is perfect, right?
Getting an appointment with the neurology department has always been a challenge. The department's insistance that no appointments be made more than two weeks in advance has been a horrid challenge for this organizationally-deficient mom. Nephrology plans months, nay, years, ahead. And we are four hours' drive from the hospital and have to plan around my office schedule as well as Babygirl's school schedule. So here is how this usually goes:
We see neurology. They say, see you in six months. We say, give us an appointment. They say, call two weeks before you are supposed to be seen. We leave, already scheduled for nephrology three months from now. Six months minus two weeks later, if I remember, I call to get a neurology appointment. If I forget, and am one day late calling, there are no appointments left because the organized moms have taken them all.
This time it went like this: After 45 minutes on-hold I am told that Babygirl's neurologist is on inpatient duty for the week we need an appointment to match up with our already-planned trip to Philly. We have a two-day window, since she is being seen Tuesday and Wednesday for other appointments. The scheduler connects me to a nurse, who tells me she will email the doc and ask if he will see Babygirl anyway. This is how she was seen last time, so I have no reason to suspect this won't work. She suggests that we make Monday available since that will widen his window for fitting her in. I make Monday available. A week later I call to find out if we have a specific time to show up on Monday. The 45 minute on-hold stymies me - I am at work, and I really don't have a lot of sit-and-wait kind of time available. I try daily. The day I finally get through and am chatting with a scheduler (Yes, I know he's doing inpatient that week, he was supposed to have been emailed about our situation, I'm checking on the response to that request) when a woman arrives in the office, stroke in progress. I explain, briefly, to the scheduler, and ask her to call me back when she's figured this out. She says she will. She does not.
Friday I tried again and was unable to wait out the on-hold. Finally, toward the end of the day, I dialed in yet again, and handed the beeping phone to one of my nurses and asked her to come and get me if a live person came on. Half an hour later, I am once again speaking to someone who tells me that Babygirl's doc is not seeing patients outpatient that week. I explain about the email, about taking an extra day off because of this. She investigates. The email was sent, and replied to in the negative - two weeks ago. Seriously? I pointed out that I had no way of knowing that, and WHY did no one call me to let me know? I ask if there are ANY docs that will see her - she's having a lot of trouble and we really need to update with somebody. Not one doc has even one appointment available Monday - Wednesday next week - scheduling has been tighter, she tells me, since they eliminated the you-can-only-schedule-two-weeks-in-advance rule.
Up until this point I've been pretty reasonable. Some of the problem has been my inability to have time available to make the appointment with exactly two weeks notice. Some has been the doc's schedule. The rest has been missed opportunities for communication. But this piece of information, the knowledge that I could have called in January and had this all worked out months ago? Nephrology would have had no problem changine their appointment! It's infuriating - even more so when she tells me that they sent out letters in January announcing the change.
I may not be perfectly organized, but I will tell you that there is not a snowball's chance that I ignored a message of any kind from CHOP. She is empathetic, but helpless to change any of this crap. She looks for an appointment and nothing at all is available for the rest of March. April.....by this time I've had a patient waiting in a room, half examined, for half an hour. I ask her to figure it out and call me back, although I assure her that I'm not sanguine about the odds that she will since we are zero-for-two so far. She assures me that she is a woman of her word, giving me her name so I can track her down if she doesn't call.
Not that it matters at this point. I'm going to have to make a separate, extra trip to Philly for whatever appointment she gives me.
My current plan is to make a pest of myself at the neurology clinic while Babygirl is at nephrology. Oh, and those letters they sent out in January? I opened mine yesterday, postmarked March 3rd. So the trigger to tell me that the scheduling rules had changed was me trying to schedule an appointment, apparently.
In the every-effing-cloud-has-a-stinkin'-silver-lining category, I was able to see my niece's high school production of Rent last night. And maybe I'll have time to finally get a haircut while I'm down here. But given the amount of trouble Babygirl's been having with school attendance, this all just sucks.
DeeDee
Getting an appointment with the neurology department has always been a challenge. The department's insistance that no appointments be made more than two weeks in advance has been a horrid challenge for this organizationally-deficient mom. Nephrology plans months, nay, years, ahead. And we are four hours' drive from the hospital and have to plan around my office schedule as well as Babygirl's school schedule. So here is how this usually goes:
We see neurology. They say, see you in six months. We say, give us an appointment. They say, call two weeks before you are supposed to be seen. We leave, already scheduled for nephrology three months from now. Six months minus two weeks later, if I remember, I call to get a neurology appointment. If I forget, and am one day late calling, there are no appointments left because the organized moms have taken them all.
This time it went like this: After 45 minutes on-hold I am told that Babygirl's neurologist is on inpatient duty for the week we need an appointment to match up with our already-planned trip to Philly. We have a two-day window, since she is being seen Tuesday and Wednesday for other appointments. The scheduler connects me to a nurse, who tells me she will email the doc and ask if he will see Babygirl anyway. This is how she was seen last time, so I have no reason to suspect this won't work. She suggests that we make Monday available since that will widen his window for fitting her in. I make Monday available. A week later I call to find out if we have a specific time to show up on Monday. The 45 minute on-hold stymies me - I am at work, and I really don't have a lot of sit-and-wait kind of time available. I try daily. The day I finally get through and am chatting with a scheduler (Yes, I know he's doing inpatient that week, he was supposed to have been emailed about our situation, I'm checking on the response to that request) when a woman arrives in the office, stroke in progress. I explain, briefly, to the scheduler, and ask her to call me back when she's figured this out. She says she will. She does not.
Friday I tried again and was unable to wait out the on-hold. Finally, toward the end of the day, I dialed in yet again, and handed the beeping phone to one of my nurses and asked her to come and get me if a live person came on. Half an hour later, I am once again speaking to someone who tells me that Babygirl's doc is not seeing patients outpatient that week. I explain about the email, about taking an extra day off because of this. She investigates. The email was sent, and replied to in the negative - two weeks ago. Seriously? I pointed out that I had no way of knowing that, and WHY did no one call me to let me know? I ask if there are ANY docs that will see her - she's having a lot of trouble and we really need to update with somebody. Not one doc has even one appointment available Monday - Wednesday next week - scheduling has been tighter, she tells me, since they eliminated the you-can-only-schedule-two-weeks-in-advance rule.
Up until this point I've been pretty reasonable. Some of the problem has been my inability to have time available to make the appointment with exactly two weeks notice. Some has been the doc's schedule. The rest has been missed opportunities for communication. But this piece of information, the knowledge that I could have called in January and had this all worked out months ago? Nephrology would have had no problem changine their appointment! It's infuriating - even more so when she tells me that they sent out letters in January announcing the change.
I may not be perfectly organized, but I will tell you that there is not a snowball's chance that I ignored a message of any kind from CHOP. She is empathetic, but helpless to change any of this crap. She looks for an appointment and nothing at all is available for the rest of March. April.....by this time I've had a patient waiting in a room, half examined, for half an hour. I ask her to figure it out and call me back, although I assure her that I'm not sanguine about the odds that she will since we are zero-for-two so far. She assures me that she is a woman of her word, giving me her name so I can track her down if she doesn't call.
Not that it matters at this point. I'm going to have to make a separate, extra trip to Philly for whatever appointment she gives me.
My current plan is to make a pest of myself at the neurology clinic while Babygirl is at nephrology. Oh, and those letters they sent out in January? I opened mine yesterday, postmarked March 3rd. So the trigger to tell me that the scheduling rules had changed was me trying to schedule an appointment, apparently.
In the every-effing-cloud-has-a-stinkin'-silver-lining category, I was able to see my niece's high school production of Rent last night. And maybe I'll have time to finally get a haircut while I'm down here. But given the amount of trouble Babygirl's been having with school attendance, this all just sucks.
DeeDee
Thursday, March 6, 2014
Undiscipined.....
Lent is here. It seems sudden, somehow. It is light in the morning, and usually light when I leave work, and I can see that the spring is coming despite the intense cold, but I feel unprepared. I haven't fully selected a Lenten discipline.
I was raised in a rather anti-Lent environment. Fundamental Christians of my childhood generally mocked the idea of meatless Fridays and "giving up" something for Lent. Jesus says we're supposed to do that stuff in secret, right? And there are 'those Catholics' bragging it up! (It was quite a revelation to me later when I realized that Catholics love Jesus too, and that heaven is going to be chock full of people I was taught were never going to make it there, but I digress.)
Over the years I've come to understand both the spirituality and the science behind Lenten disciplines. Scientists have long understood that it takes about 30 days to firm up a new habit. Make it 40 and you should be good to go. Self-improvement, here we come! But if the purpose of Lent is to prepare for Easter, our discipline should not be about ourselves at all. How does 'giving up' something for Lent bring me closer to God or my fellow man? I gave up 'giving up' long ago. 'Giving out' just makes more sense to me.
I've seen some good suggestions for Lenten disciplines this year. My favorite may be "Forty Bags in Forty Days.," in which one removes one bag of anything daily from ones' home. The purpose of this is to rid your home of clutter. This could certainly better many a family, and if the clutter is donated to a charity, it could benefit others as well, but somehow it seems inherently selfish: If I do this MY home will be a better place. I suppose it depends on the spirit in which it is done. Our home is nothing if not uncluttered. Since Babygirl's dialysis started we've concentrated on being able to keep the house thoroughly clean. But like many people, we cleaned but we may not have completely decluttered - please don't ask to look at my third floor or my basement!
Babygirl has been campaigning for months to take over the third floor as her own space. Since we have to walk through her current room to get to it, we really aren't using it for anything - except as a place to drop everything we aren't using.
So I will help Babygirl with her discipline - declutter the attic. It will be a motivator to get her going. It will benefit charity - lots of rummage sale donations. It will, I hope, benefit our relationship. For my own discipline, I think I will once again do random acts of kindness. Focusing outward on the needs of people around me gets me out of myself, and makes me think more like Jesus would think. And at least once, I will be kind to myself; not in the sense of giving myself something like a pedicure, but in the sense of forgiving myself, cutting myself some slack, letting go of the often unnecessary pressure that I put on myself - that layer that lies on top of all the pressures life itself has handed me - and living in the peaceful, forgiving Presence of God.
DeeDee
I was raised in a rather anti-Lent environment. Fundamental Christians of my childhood generally mocked the idea of meatless Fridays and "giving up" something for Lent. Jesus says we're supposed to do that stuff in secret, right? And there are 'those Catholics' bragging it up! (It was quite a revelation to me later when I realized that Catholics love Jesus too, and that heaven is going to be chock full of people I was taught were never going to make it there, but I digress.)
Over the years I've come to understand both the spirituality and the science behind Lenten disciplines. Scientists have long understood that it takes about 30 days to firm up a new habit. Make it 40 and you should be good to go. Self-improvement, here we come! But if the purpose of Lent is to prepare for Easter, our discipline should not be about ourselves at all. How does 'giving up' something for Lent bring me closer to God or my fellow man? I gave up 'giving up' long ago. 'Giving out' just makes more sense to me.
I've seen some good suggestions for Lenten disciplines this year. My favorite may be "Forty Bags in Forty Days.," in which one removes one bag of anything daily from ones' home. The purpose of this is to rid your home of clutter. This could certainly better many a family, and if the clutter is donated to a charity, it could benefit others as well, but somehow it seems inherently selfish: If I do this MY home will be a better place. I suppose it depends on the spirit in which it is done. Our home is nothing if not uncluttered. Since Babygirl's dialysis started we've concentrated on being able to keep the house thoroughly clean. But like many people, we cleaned but we may not have completely decluttered - please don't ask to look at my third floor or my basement!
Babygirl has been campaigning for months to take over the third floor as her own space. Since we have to walk through her current room to get to it, we really aren't using it for anything - except as a place to drop everything we aren't using.
So I will help Babygirl with her discipline - declutter the attic. It will be a motivator to get her going. It will benefit charity - lots of rummage sale donations. It will, I hope, benefit our relationship. For my own discipline, I think I will once again do random acts of kindness. Focusing outward on the needs of people around me gets me out of myself, and makes me think more like Jesus would think. And at least once, I will be kind to myself; not in the sense of giving myself something like a pedicure, but in the sense of forgiving myself, cutting myself some slack, letting go of the often unnecessary pressure that I put on myself - that layer that lies on top of all the pressures life itself has handed me - and living in the peaceful, forgiving Presence of God.
DeeDee
Wednesday, March 5, 2014
Big Girl Panties......
There is, in life, a fine distinction between being compassionate and being a patsy. All parents walk the line between being a parent and being a friend, and the smart ones are parents for the first 18 years and THEN friends. I've always been the "cool" mom - never saying 'no' to the slumber or pool party, always having extra people over for dinner. I'd like to think I've usually been the "tough" mom - unafraid of whether or not my kid hated me for taking a stand and saying 'no way!" to a lot of the things kids think are cool.
Parents of chronically ill children are on a very uncomfortable tightrope without a net. Being compassionate to your child's suffering without letting them take advantage of that compassion requires more discernment than Solomon.
When Citygirl stopped eating, I took her to three different visits every week. The family doc did weigh-ins and blood work. The counselor dealt with emotional issues. The nutritionist/eating disorders specialist did weigh-ins, counseling and tough advice. At one point I told the nutritionist about a fall Citygirl had taken during a softball game, and how it demonstrated a level of muscular weakness that frightened me. Her response was eye-opening: "WHY on earth are you letting her do sports?" Her point was well-taken. Why would any parent of a nutritionally-impaired child let that child burn off calories unnecessarily? It was a massive 'Aha!' moment. I could use Citygirl's love of team sports as a carrot-on-a-stick: You maintain a healthier weight and I let you play. I truly believe that it is what led to her recovery. As I made her balance exercise and food in a healthier way she found her way back from the brink of disaster.
There were similar moments with Curlygirl. Her asthma was not nearly as big a force to be reckoned with as her personality. But one particular attack (which she herself doesn't specifically remember) at age nine turned the tide of compliance entirely in my favor: She, after three rapidly consecutive breathing treatments, had a spell of coughing that lit up her eyes with fear. Her body was clearly telling her that she was losing the struggle and that she might not get enough air. We had been fighting that attack for months already and fought for months after, but it was a watershed moment in her desire to take meds without arguing, do breathing treatments before the crisis hit, and come and ask for help and trust that it would be given.
For both of them, the crisis lasted about a year. To top it off, it just happened to be the SAME year. So to Citygirl's three weekly visits, add all-night breathing treatments and monthly runs up the highway to the pediatric lung specialist 70 miles away.
I am no stranger to fear and medical burn-out.
Babygirl is ten years younger than Citygirl, and six years younger than Curlygirl. I am ten years older now than I was when her sisters were in their crisis year, and she is on her third year of crisis management. It is easier to let 'crisis fatigue' take over. I am more at risk of accepting 'the way things are' instead of fighting for 'the way things should be.' Are we being hopeless, fatalistic or realistic when we accept, day after day, that not feeling well is normal?
September to December Babygirl missed a day or two of school weekly. It was better than last year at the same time. But January to now I think she's gone to school for maybe three days? Five? Her specific complaints of headache and abdominal pain have gradually morphed into "I don't feel good." Headache, sore throat, body aches, belly aches, and an ever-decreasing vocal volume and unwillingness to get up and do ANYTHING have become our new 'normal'. Her tutor stayed only an hour the other day because Babygirl was so clearly exhausted. I am sure Babygirl is not exaggerating how bad she feels. But how many times have we, as grownups, had to pull on our Big Girl panties, suck it up and carry on despite all that? It sure as hell is what I've been doing for the past three years.
Yesterday morning I woke Babygirl up to take her medications. A bit later I realized that I hadn't actually seen her come and take them. I checked the sorter - not only had she not taken her morning pills yet, she had not take the ones from the evening before, or the evening before that. I snapped. SNAPPED.
After hauling the blankets off of her I yelled, and yelled some more. I told her in no uncertain terms to get her a** out of bed, get dressed, take her pills and be ready for me to take her to school "and never mind crying about it!" It was a 'put on your Big Girl Panties or die' moment.
It wasn't pretty. There was cry-until-you-vomit. There were calls from the school nurse, who bravely gave her Tylenol and a rest and sent her back to class. There was me, sitting on my phone (which God very kindly let die sometime around lunch) and holding my breath and hating myself. There was hubby, doing the same. Babygirl walked home and went straight to bed. But she got up and actually ate a little dinner with us.
So now I am bracing myself, trying to work up the courage to go upstairs and do it all again (perhaps without the swearing and screaming this time). I hate making her suffer through school, but my gut feeling is that if I don't make her try, that if I let her give up, that the damage to her spirit and courage may become irreparable. Until now I've done my best to let how she feels decide what she will do. But I think that it is time to teach her to do what she must despite how she feels. So say a prayer - I'm going suck it up, put on my Big Girl Panties, be the mean mom and hope to God that this is the time to teach her to overcome, and not some massively mistaken version of tough love.
DeeDee
Parents of chronically ill children are on a very uncomfortable tightrope without a net. Being compassionate to your child's suffering without letting them take advantage of that compassion requires more discernment than Solomon.
When Citygirl stopped eating, I took her to three different visits every week. The family doc did weigh-ins and blood work. The counselor dealt with emotional issues. The nutritionist/eating disorders specialist did weigh-ins, counseling and tough advice. At one point I told the nutritionist about a fall Citygirl had taken during a softball game, and how it demonstrated a level of muscular weakness that frightened me. Her response was eye-opening: "WHY on earth are you letting her do sports?" Her point was well-taken. Why would any parent of a nutritionally-impaired child let that child burn off calories unnecessarily? It was a massive 'Aha!' moment. I could use Citygirl's love of team sports as a carrot-on-a-stick: You maintain a healthier weight and I let you play. I truly believe that it is what led to her recovery. As I made her balance exercise and food in a healthier way she found her way back from the brink of disaster.
There were similar moments with Curlygirl. Her asthma was not nearly as big a force to be reckoned with as her personality. But one particular attack (which she herself doesn't specifically remember) at age nine turned the tide of compliance entirely in my favor: She, after three rapidly consecutive breathing treatments, had a spell of coughing that lit up her eyes with fear. Her body was clearly telling her that she was losing the struggle and that she might not get enough air. We had been fighting that attack for months already and fought for months after, but it was a watershed moment in her desire to take meds without arguing, do breathing treatments before the crisis hit, and come and ask for help and trust that it would be given.
For both of them, the crisis lasted about a year. To top it off, it just happened to be the SAME year. So to Citygirl's three weekly visits, add all-night breathing treatments and monthly runs up the highway to the pediatric lung specialist 70 miles away.
I am no stranger to fear and medical burn-out.
Babygirl is ten years younger than Citygirl, and six years younger than Curlygirl. I am ten years older now than I was when her sisters were in their crisis year, and she is on her third year of crisis management. It is easier to let 'crisis fatigue' take over. I am more at risk of accepting 'the way things are' instead of fighting for 'the way things should be.' Are we being hopeless, fatalistic or realistic when we accept, day after day, that not feeling well is normal?
September to December Babygirl missed a day or two of school weekly. It was better than last year at the same time. But January to now I think she's gone to school for maybe three days? Five? Her specific complaints of headache and abdominal pain have gradually morphed into "I don't feel good." Headache, sore throat, body aches, belly aches, and an ever-decreasing vocal volume and unwillingness to get up and do ANYTHING have become our new 'normal'. Her tutor stayed only an hour the other day because Babygirl was so clearly exhausted. I am sure Babygirl is not exaggerating how bad she feels. But how many times have we, as grownups, had to pull on our Big Girl panties, suck it up and carry on despite all that? It sure as hell is what I've been doing for the past three years.
Yesterday morning I woke Babygirl up to take her medications. A bit later I realized that I hadn't actually seen her come and take them. I checked the sorter - not only had she not taken her morning pills yet, she had not take the ones from the evening before, or the evening before that. I snapped. SNAPPED.
After hauling the blankets off of her I yelled, and yelled some more. I told her in no uncertain terms to get her a** out of bed, get dressed, take her pills and be ready for me to take her to school "and never mind crying about it!" It was a 'put on your Big Girl Panties or die' moment.
It wasn't pretty. There was cry-until-you-vomit. There were calls from the school nurse, who bravely gave her Tylenol and a rest and sent her back to class. There was me, sitting on my phone (which God very kindly let die sometime around lunch) and holding my breath and hating myself. There was hubby, doing the same. Babygirl walked home and went straight to bed. But she got up and actually ate a little dinner with us.
So now I am bracing myself, trying to work up the courage to go upstairs and do it all again (perhaps without the swearing and screaming this time). I hate making her suffer through school, but my gut feeling is that if I don't make her try, that if I let her give up, that the damage to her spirit and courage may become irreparable. Until now I've done my best to let how she feels decide what she will do. But I think that it is time to teach her to do what she must despite how she feels. So say a prayer - I'm going suck it up, put on my Big Girl Panties, be the mean mom and hope to God that this is the time to teach her to overcome, and not some massively mistaken version of tough love.
DeeDee
Sunday, March 2, 2014
Doped Up......
The migraine journey has been very difficult for both Babygirl and I. Neither of us could be considered to be "controlled." The goal of prevention is to get down to less than three headaches a month. Babygirl would be happy with three a week. Me too, for that matter, although mine are not as crippling as hers most of the time.
The medications they can use for prevention for Babygirl are limited by the potential (however remote) for kidney damage. Thus far, those that are safe for the kidney have shown limited effectiveness in long-term prevention. She was doing pretty well in the summer, although it is easier to drop out, take a pill, and relax - no one notices so much. During the fall semester she was missing a day or two a week. Now, with one virus and one bacterial infection so far since New Year's, and a significant increase in headache activity, she's barely in school at all again. My medication choices are limited by side cognitive side effects. Who knew I was such a freaking lightweight?
Two full weeks on gabapentin is enough. Clarity of thinking? Okay I guess. Word retrieval? Bad - I know what's wrong with my patients but have trouble using more than two syllable words to describe it. Sleep patterns? Messed up. Weight gain? Holy cow, yeah. Fatigue? I'm not sure that's the correct word. Whatever word you can come up with that describes one laying on a couch like a slug watching idiocy on the TV instead of reading, listening to music, doing the dishes or cooking? I have quite honestly seen snails move faster. I skipped from Friday night to this morning (and only took that one because I failed to remove the hateful little suckers from my pill sorter). Yesterday evening I felt almost normal. Today, the fog settles.
So I am done with this medication. Done. I'll call both Babygirl's and my neurologist tomorrow and see what is next.
DeeDee
PS Yes, I took all the rest of them out of the pill sorter.
The medications they can use for prevention for Babygirl are limited by the potential (however remote) for kidney damage. Thus far, those that are safe for the kidney have shown limited effectiveness in long-term prevention. She was doing pretty well in the summer, although it is easier to drop out, take a pill, and relax - no one notices so much. During the fall semester she was missing a day or two a week. Now, with one virus and one bacterial infection so far since New Year's, and a significant increase in headache activity, she's barely in school at all again. My medication choices are limited by side cognitive side effects. Who knew I was such a freaking lightweight?
Two full weeks on gabapentin is enough. Clarity of thinking? Okay I guess. Word retrieval? Bad - I know what's wrong with my patients but have trouble using more than two syllable words to describe it. Sleep patterns? Messed up. Weight gain? Holy cow, yeah. Fatigue? I'm not sure that's the correct word. Whatever word you can come up with that describes one laying on a couch like a slug watching idiocy on the TV instead of reading, listening to music, doing the dishes or cooking? I have quite honestly seen snails move faster. I skipped from Friday night to this morning (and only took that one because I failed to remove the hateful little suckers from my pill sorter). Yesterday evening I felt almost normal. Today, the fog settles.
So I am done with this medication. Done. I'll call both Babygirl's and my neurologist tomorrow and see what is next.
DeeDee
PS Yes, I took all the rest of them out of the pill sorter.
Saturday, March 1, 2014
Writing Prescriptions.....
After all the drama last week over obtaining what was, after all, a prescription for something penicillin-like, a good friend asked, "Can't you write it yourself?" Well, it's true, I suppose, that I could. Indeed, I have. JuJuBee came down with what was clearly strep throat at the beach, so I called in an antibiotic to the local pharmacy. Hubby forgot some of his meds on a trip - no problem. My brother emailed me a picture of his pinkeye. My nephew had an asthma attack on Nantucket Island. I've stepped up and treated family. It was even easier when there were samples! Sprained knee? I've got the latest anti-inflammatory right here!
As privacy rules have evolved, I've done this less. I have no real right to treat people that are not actually my patients. I'm leerier of writing prescriptions for people who share my last name. I have a better grip on how little it might take to alienate even a family member with a mistake based on too little information.
None of this applies to Babygirl. I know her medical history, allergies, vaccinations, medications and reactions better than I know my own name. And speaking of names, she has a different one. So why not step in?
I have not. I am not the only one who has noticed lately that I am barely sane. I am not, I repeat NOT, competent to make decisions about her care. Even if it's something as simple as strep throat, I need some other doc to SIT on me and keep me from taking things into my own hands. Not only is her condition far beyond my training and ability to manage, my objectivity is....missing.
Objectivity is that quality that allows a doctor to visualize the possibilities, imagine outcomes, and guide a patient into selecting what works for them. It's what makes me able to tell a patient bad news without pulling any punches. It's what makes it possible to come home and be with my family and leave the rest behind, usually. I possess NONE of this where Babygirl is concerned. None. And while I know that calling in an expected script for a mild throat infection is benign enough, I fear that if I cross that line I won't be able to cross back.
There is a medical maxim that goes, "He who treats himself has a fool for a doctor." And a fool for a patient, I might add. I prefer to keep the faith. Faith that my colleagues are, at the least, not fools. To do otherwise has unthinkable implications for my baby.
DeeDee
As privacy rules have evolved, I've done this less. I have no real right to treat people that are not actually my patients. I'm leerier of writing prescriptions for people who share my last name. I have a better grip on how little it might take to alienate even a family member with a mistake based on too little information.
None of this applies to Babygirl. I know her medical history, allergies, vaccinations, medications and reactions better than I know my own name. And speaking of names, she has a different one. So why not step in?
I have not. I am not the only one who has noticed lately that I am barely sane. I am not, I repeat NOT, competent to make decisions about her care. Even if it's something as simple as strep throat, I need some other doc to SIT on me and keep me from taking things into my own hands. Not only is her condition far beyond my training and ability to manage, my objectivity is....missing.
Objectivity is that quality that allows a doctor to visualize the possibilities, imagine outcomes, and guide a patient into selecting what works for them. It's what makes me able to tell a patient bad news without pulling any punches. It's what makes it possible to come home and be with my family and leave the rest behind, usually. I possess NONE of this where Babygirl is concerned. None. And while I know that calling in an expected script for a mild throat infection is benign enough, I fear that if I cross that line I won't be able to cross back.
There is a medical maxim that goes, "He who treats himself has a fool for a doctor." And a fool for a patient, I might add. I prefer to keep the faith. Faith that my colleagues are, at the least, not fools. To do otherwise has unthinkable implications for my baby.
DeeDee
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