Babygirl's arrival in the Transplant Clinic surprised the front desk staff. After all, we just left! And we weren't on the schedule.
As always, Babygirl and I came in on more or less empty stomachs. We'd each had some coffee an climbed into Beauty for the traffic-raddled ride into downtown. Usually there are blood work orders waiting. We hit the lab at 8, follow with breakfast and meds in the cafeteria, and come back to be seen. This time? "They want to examine her before they order any labs."
Well, that makes perfect sense to me.
We waited (not long) and saw the nurse practitioner, who pulled up the ER labs. "Well, it isn't a urinary tract infection!" (No kidding. I refrained from fist-pumping to celebrate my superior diagnostic skills.) Then the doc, who examined her, the labs, the history, and who said, unabashedly, "I have no idea what this is." Um, could you teach a seminar to doctors in general on how to say that out loud instead of, say, giving out unnecessary antibiotics for spurious 'UTI's'?
Bottom line: Observe. Keep a diary. Return to the ER if there are any more interesting symptoms, like fever and vomiting but stay home for mere repeats of this same pain. Maybe she needs a Gynecologist (or as my friend puts it, a Groinecologist). Maybe (just my thought) it's a variation on the migraine (it happens). See you in December as scheduled. Get these labs done right after Halloween. No need for labs today. Enjoy your breakfast.
We were out the door of the clinic by 9:20.
So the entire purpose of our 384 mile round-trip was apparently to enjoy the extreme blue-sky beauty of Mount Pocono in full fall foliage followed by a glass of wine with my best friend. It was amazing, absolutely amazing - both the trees and the friendship. Now to catch up on work.
DeeDee
Monday, September 30, 2013
Saturday, September 28, 2013
Miscellany....
When you are sitting in an ER with your chronically ill child you inevitably consider that you might end up admitted. In fact, BEFORE you go to the ER with your child you will have already begun to prep for what will undoubtedly be a long, long day.
When I left work to go home to get Babygirl and take her to the hospital yesterday, I glanced at the gas gauge - half plus, good to go. I contemplated temperature control. Hospitals are either freezing or boiling, so layers are a must. So I ran to the basement to put the washer contents into the dryer - my favorite sweatshirt was in there. I figured it would be dry by the time anybody even ordered any tests (I was wrong - it was dry about mid-ultrasound). I found Babygirl's favorite sweatpants, ran down my mental list of comfy clothes (all clean!) and changed from work pants to loose khakis.
Note to self: Never, ever leave home without a prayer shawl or two. Babygirl got warm blankets. I got cold.
One kink: My phone died earlier this week. I was planning on getting a new one Friday evening. WHY is my phone always dead or uncharged when these things happen? Hubby heard secondhand (my 9 AM patient who was the first to be cancelled works with him) that we were on our way to the hospital. The fact that we were discharged allowed me to carry on with my plan to get a new phone.
One more kink: They were able to transfer my contact list from the old phone. Except that some of my contacts were randomly assigned new numbers. I sent a text to Babygirl that said, "PILLS!!!!!" It went to some random stranger in Narragansett, Rhode Island. The resulting conversation was entertaining. I tried to call Curlygirl today (to cancel her birthday party) and once again got a puzzled response when I insisted I was some unknown girl's Mom. Oops. So if you are in my contact list you might want to text me your actual number. Oddly, many numbers seem okay, and most have at least the right area code, making it all the harder for me to determine if the numbers are correct.
Aside: Cell phones are making us dumb. I used to keep everybody's number in my head. Of course, now I can hardly keep ANYTHING in my head.
The worst of the phone weirdness is that I lost most of my CHOP numbers. Ugh.
I'm supposed to sing in church tomorrow. I have a hideous migraine and can't listen to music. Lordy. I have the screen on the computer almost dark. It works. Sleeping would work too except that seems to be off my to-do list. So is keeping dinner down.
I was going to mention one more miscellaneous thing....but it floated away somewhere.
At least I know my stuff is clean for whatever happens on Monday.
DeeDee
When I left work to go home to get Babygirl and take her to the hospital yesterday, I glanced at the gas gauge - half plus, good to go. I contemplated temperature control. Hospitals are either freezing or boiling, so layers are a must. So I ran to the basement to put the washer contents into the dryer - my favorite sweatshirt was in there. I figured it would be dry by the time anybody even ordered any tests (I was wrong - it was dry about mid-ultrasound). I found Babygirl's favorite sweatpants, ran down my mental list of comfy clothes (all clean!) and changed from work pants to loose khakis.
Note to self: Never, ever leave home without a prayer shawl or two. Babygirl got warm blankets. I got cold.
One kink: My phone died earlier this week. I was planning on getting a new one Friday evening. WHY is my phone always dead or uncharged when these things happen? Hubby heard secondhand (my 9 AM patient who was the first to be cancelled works with him) that we were on our way to the hospital. The fact that we were discharged allowed me to carry on with my plan to get a new phone.
One more kink: They were able to transfer my contact list from the old phone. Except that some of my contacts were randomly assigned new numbers. I sent a text to Babygirl that said, "PILLS!!!!!" It went to some random stranger in Narragansett, Rhode Island. The resulting conversation was entertaining. I tried to call Curlygirl today (to cancel her birthday party) and once again got a puzzled response when I insisted I was some unknown girl's Mom. Oops. So if you are in my contact list you might want to text me your actual number. Oddly, many numbers seem okay, and most have at least the right area code, making it all the harder for me to determine if the numbers are correct.
Aside: Cell phones are making us dumb. I used to keep everybody's number in my head. Of course, now I can hardly keep ANYTHING in my head.
The worst of the phone weirdness is that I lost most of my CHOP numbers. Ugh.
I'm supposed to sing in church tomorrow. I have a hideous migraine and can't listen to music. Lordy. I have the screen on the computer almost dark. It works. Sleeping would work too except that seems to be off my to-do list. So is keeping dinner down.
I was going to mention one more miscellaneous thing....but it floated away somewhere.
At least I know my stuff is clean for whatever happens on Monday.
DeeDee
Friday, September 27, 2013
Bellyache.....
Babygirl awoke with a bellyache. The same as LAST Friday's bellyache, neither better nor worse. No fever. No nausea. No bowel issues. No urinary symptoms. Just Babygirl, hunched over and saying she was too sick to go to school.
Last weeks' bellyache went away with no help from anybody but God. Each day was better than the one before, and in the end I decided it wasn't anything to worry about.
So why worry about the identical problem a week later?
Sigh. Nothing that happens once that goes away by itself is ever really a problem. It's when the problem comes back that we start to worry, medically speaking. And honestly, if it weren't for the kidney transplant I'd have to say there was still nothing terribly alarming about it.
Transplant patients can probably never truly be considered to be healthy. Stuff that other people shake off in a minute can take a transplant patient OUT.
So I called the transplant team. The nephrology Fellow knows us. I told her the story, and she said she'd track down the attending and call back with a plan - maybe an order for some blood work and an ultrasound. That seemed like a good idea to me - and I'd be able to work that in around my half-day of work and Mom's cardiology appointment (remember the broken pacemaker wire? Yeah, still working on that). I don't know what I was thinking.
By the time the Fellow called back I was hard at work on my usual Friday morning paperwork stack. Disability forms, school physical forms, letters to insurance companies explaining why I might have a better idea what my patient needs than the gum-chewing high-school-educated pencil-pushing gateway geeks who make the decisions about formularies and medical supplies. Stuff like that.
"Take her to the ER. Tell them (oh, yeah, they love when I do that!) that we want a CMP, CBC, UA and kidney sono."
I jot it all down. Honestly, the ER doc would have to be a total moron not to want the same stuff anyway. Except he wanted a CT scan instead of an ultrasound.
"Dude. You can't put CT contrast through a transplanted kidney." Honest, it's bad for the kidney. "Well, oral contrast only then." "It's a lot of radiation for a kid, doc. Why don't we do the CT if the sono doesn't tell us what we need to know."
Off to ultrasound we go. "Does Babygirl have a full bladder?" Likely not - she just produced a urine specimen at the request of her nurse. "Do you need her to have a full bladder to see the kidney transplant?" Eyebrows meet hairline. "Let me make a call."
Once the purpose of the study was clarified and the correct orders given, we were off. The kidney looks fine, except her right ovary appears to be adherent to the backside of it (scars happen, right?). They can't locate her appendix, but as the radiologist who came in to assist in the search pointed out: "No one with appendicitis would be able to tolerate this exam." Yup. They were pushing pretty hard. Babygirl never peeped, but you could see her break out in sweat at one point.
While we were in ultrasound, I passed the point of no return on getting mom out of the house and to the cardiologist. I called to reschedule.
No wiser, we return to her cubicle. ER doc shows me the labs: "She has a UTI!" She's anemic, as usual, slightly worse than usual. Kidney's working fine, no increased white count to indicate infection (although that doesn't mean much - she can't make many white blood cells). Urine showed some white blood cells and not much else, except some skin cells, meaning that the specimen wasn't 'clean'. No blood. No nitrites (bacterial breakdown products often seen in UTI's). From my perspective, it's a pretty bland specimen. He calls the nephrology attending, announces his finding, and then listens and grunts and 'yes, but..'s a lot while she patiently explains to him.....what, I don't know. I can only hear his end of the conversation (and I don't think he knows I can hear him).
He comes back and says CHOP wants her to have a liter of fluids and he's going to put in an IV. Apparently I was a bit too relaxed to note her vital signs. Her blood pressure was 80/30 on one of the readings, and the rest were pretty low as well. They failed to get the IV on the first try and I refused a second. The kid has mouth, you aren't considering surgery, how 'bout we just make her DRINK a liter of fluid? (I added a bag of salty junk food while she was drinking. Worked like a charm.) Her pressure came up.
We were discharged with antibiotics and instructions to go to CHOP for a recheck on Monday morning. By then they will have the results of the urine culture, and we'll go from there.
But I sincerely think that we were given the advice we were give because the ER doctor didn't want to send us out the door without an actual "diagnosis".
We docs sincerely hate to tell patients that we have no idea at all what is going on.
DeeDee
Last weeks' bellyache went away with no help from anybody but God. Each day was better than the one before, and in the end I decided it wasn't anything to worry about.
So why worry about the identical problem a week later?
Sigh. Nothing that happens once that goes away by itself is ever really a problem. It's when the problem comes back that we start to worry, medically speaking. And honestly, if it weren't for the kidney transplant I'd have to say there was still nothing terribly alarming about it.
Transplant patients can probably never truly be considered to be healthy. Stuff that other people shake off in a minute can take a transplant patient OUT.
So I called the transplant team. The nephrology Fellow knows us. I told her the story, and she said she'd track down the attending and call back with a plan - maybe an order for some blood work and an ultrasound. That seemed like a good idea to me - and I'd be able to work that in around my half-day of work and Mom's cardiology appointment (remember the broken pacemaker wire? Yeah, still working on that). I don't know what I was thinking.
By the time the Fellow called back I was hard at work on my usual Friday morning paperwork stack. Disability forms, school physical forms, letters to insurance companies explaining why I might have a better idea what my patient needs than the gum-chewing high-school-educated pencil-pushing gateway geeks who make the decisions about formularies and medical supplies. Stuff like that.
"Take her to the ER. Tell them (oh, yeah, they love when I do that!) that we want a CMP, CBC, UA and kidney sono."
I jot it all down. Honestly, the ER doc would have to be a total moron not to want the same stuff anyway. Except he wanted a CT scan instead of an ultrasound.
"Dude. You can't put CT contrast through a transplanted kidney." Honest, it's bad for the kidney. "Well, oral contrast only then." "It's a lot of radiation for a kid, doc. Why don't we do the CT if the sono doesn't tell us what we need to know."
Off to ultrasound we go. "Does Babygirl have a full bladder?" Likely not - she just produced a urine specimen at the request of her nurse. "Do you need her to have a full bladder to see the kidney transplant?" Eyebrows meet hairline. "Let me make a call."
Once the purpose of the study was clarified and the correct orders given, we were off. The kidney looks fine, except her right ovary appears to be adherent to the backside of it (scars happen, right?). They can't locate her appendix, but as the radiologist who came in to assist in the search pointed out: "No one with appendicitis would be able to tolerate this exam." Yup. They were pushing pretty hard. Babygirl never peeped, but you could see her break out in sweat at one point.
While we were in ultrasound, I passed the point of no return on getting mom out of the house and to the cardiologist. I called to reschedule.
No wiser, we return to her cubicle. ER doc shows me the labs: "She has a UTI!" She's anemic, as usual, slightly worse than usual. Kidney's working fine, no increased white count to indicate infection (although that doesn't mean much - she can't make many white blood cells). Urine showed some white blood cells and not much else, except some skin cells, meaning that the specimen wasn't 'clean'. No blood. No nitrites (bacterial breakdown products often seen in UTI's). From my perspective, it's a pretty bland specimen. He calls the nephrology attending, announces his finding, and then listens and grunts and 'yes, but..'s a lot while she patiently explains to him.....what, I don't know. I can only hear his end of the conversation (and I don't think he knows I can hear him).
He comes back and says CHOP wants her to have a liter of fluids and he's going to put in an IV. Apparently I was a bit too relaxed to note her vital signs. Her blood pressure was 80/30 on one of the readings, and the rest were pretty low as well. They failed to get the IV on the first try and I refused a second. The kid has mouth, you aren't considering surgery, how 'bout we just make her DRINK a liter of fluid? (I added a bag of salty junk food while she was drinking. Worked like a charm.) Her pressure came up.
We were discharged with antibiotics and instructions to go to CHOP for a recheck on Monday morning. By then they will have the results of the urine culture, and we'll go from there.
But I sincerely think that we were given the advice we were give because the ER doctor didn't want to send us out the door without an actual "diagnosis".
We docs sincerely hate to tell patients that we have no idea at all what is going on.
DeeDee
Wednesday, September 25, 2013
Year Three, Week 24 - Easily Frightened....
Last week, the day after we came back from Philly, Babygirl awoke with a bellyache. No fever. No nausea. No urinary symptoms. Not like cramps. Low in the belly - right over the transplanted kidney. No trauma, no recent heavy lifting or change in activity. Just pain - bad pain. Tylenol didn't really help, so I gave he the tramadol we keep for her worst headaches, and she stayed home from school and went to bed.
And I went to work.
Every mom knows that day - the one where you wish with all you are that you could stay home and sit vigil over a child who is ill.
But we are shorthanded - one of my partners is sporting a new knee, and won't be back for a few more weeks. I have two students, and I'd just skipped a day to go to Philly. My desk would be literally buried by work leftover from Wednesday and the missed day, and that work represents needs ranging from silly to desperate, needing focus and attention from someone who can tell the difference.
Focus. Sigh.
I wanted to call every ten minutes. I didn't. I wanted to go home at lunchtime and see if she was okay. I couldn't. I wanted to get home early and see for myself that she wasn't dangerously ill. I barely made if for dinner at 6:30.
At work I wanted to be kind. I was short-tempered. I wanted to be tough. I was weepy. I wanted to concentrate. I felt SO scattered. I can't believe I actually accomplished anything. I can't remember anything but the desperate desire to get the damned charts off my damned desk and dump the damned task list into my damned computer's recycle bin.
I'm pretty damned sure that witnesses will freely attest to the fact that my language was much, much worse than that.
She was fine, sort of. Still in pain, no fever, no symptoms except the pain.
By Monday morning it was gone, and she was saying things like, "Maybe I fell out of bed or something..." Ummm......okay? And, "What if I had had appendicitis like Dad?" Uh, yeah, crossed my mind.
I've been doing better at not getting totally hysterical about every little thing. But this scared the crap out of me. I'm still not sleeping, and I'm still pretty cranky.
DeeDee
And I went to work.
Every mom knows that day - the one where you wish with all you are that you could stay home and sit vigil over a child who is ill.
But we are shorthanded - one of my partners is sporting a new knee, and won't be back for a few more weeks. I have two students, and I'd just skipped a day to go to Philly. My desk would be literally buried by work leftover from Wednesday and the missed day, and that work represents needs ranging from silly to desperate, needing focus and attention from someone who can tell the difference.
Focus. Sigh.
I wanted to call every ten minutes. I didn't. I wanted to go home at lunchtime and see if she was okay. I couldn't. I wanted to get home early and see for myself that she wasn't dangerously ill. I barely made if for dinner at 6:30.
At work I wanted to be kind. I was short-tempered. I wanted to be tough. I was weepy. I wanted to concentrate. I felt SO scattered. I can't believe I actually accomplished anything. I can't remember anything but the desperate desire to get the damned charts off my damned desk and dump the damned task list into my damned computer's recycle bin.
I'm pretty damned sure that witnesses will freely attest to the fact that my language was much, much worse than that.
She was fine, sort of. Still in pain, no fever, no symptoms except the pain.
By Monday morning it was gone, and she was saying things like, "Maybe I fell out of bed or something..." Ummm......okay? And, "What if I had had appendicitis like Dad?" Uh, yeah, crossed my mind.
I've been doing better at not getting totally hysterical about every little thing. But this scared the crap out of me. I'm still not sleeping, and I'm still pretty cranky.
DeeDee
Sunday, September 22, 2013
Hamsters for Dinner......
Taking care of my Mom as her memory declines is both a challenge and a joy. She retains her sense of humor, but the problem is that she can't connect the conversation to the joke anymore. This leads to some oddly timed repeats that can leave us in stitches or in tears, depending.
She asks almost every question at least four times. The commonest question we hear is "What's for dinner?" She'll ask over and over and it doesn't really matter what we say. So we make things up.
"What's for dinner?"
"Hamsters."
"Hamsters??"
"Yes, we got them in Hamsterdam." At which point we are singing variations on Boy Scout songs: "Hamster, Hamster, damdamdam..." (If you don't have THAT tune stuck in your head for the rest of the day, you had a sad and lonely childhood.)
She notices when the grandkids aren't here. She asks about babies every day. Since they are only here on weekends for dinner, that adds up to a lot of questions about babies and where they are located, and our answers vary from, "With their parents" to "Off to see the Wizard" in scope.
It's not mean if she can't remember, is it? Well, maybe LOL.
I've heard from friends that hygiene and dementia are not friends with each other. What is it that makes the forgetful seem to think that showers are freezing cold and quite possibly toxic? It's worse than the preteen I'm-not-dirty-I-bathed-four-days-ago phase. And since the passage of time means nothing to her at this point (she asked me yesterday during my weekly changing-of-the-linens why on earth I do that every single day), she thinks I'm trying to shove her into the shower daily. Since showering her takes well over an hour (cajoling, wheedling, bribing, demanding, shower plus un/dressing and hairstyling) I'd be insane to try it daily.
Changes in routine are not a problem. She like going out to go to the doctor but she wants a double Quarter Pounder with Cheese each time. And since she can't remember whether she's eaten or not, she keeps on asking. And asking. And asking. Not to mention that the LAST thing her cardiologist would want her eating is a QPC. With fries. Add extra sodium, please. Lord.
I want her to enjoy life as best she can while she can. We eat well, and sometimes adjust her water pills to compensate for the extra salt if we get a pizza or some Chinese (and trust me, she eats far less of that under our supervision than she did when she lived alone!). Balancing her heart failure against her dying kidneys against her memory loss is a fine, delicate thing.
I have had many conversations about end-of-life care with my mom, the majority of which took place long before the dementia was well-entrenched. In every single conversation she voted for quantity of life over quality. Respirator? Yes. CPR? Yes. Feeding tube? HELL, yes. No matter what? Even if you are so far gone you don't know you are there? YES.
Ugh. This stands in direct opposition to what common sense, and common decency would dictate. I don't understand how someone who spent years as a nurses' aid in a nursing home could think this way. But it IS how she thinks. So how do I apply it?
If I let her eat the way she wants to she'll be in the hospital by Friday and dead by the end of the year. Restricting her is practical, but it takes away the only clear joy she has left in life. She has a broken pacemaker wire (one of two - the other is pacing for now). Repair/replace and risk surgical complications that would worsen her quality of life? Leave it alone and risk decreasing her quantity of life? She's no longer competent to decide for herself, and I'm stuck with a promise made as health care proxy to do what SHE would want to do. According to her guidelines I should never let her eat anything she likes again AND replace the pacing wire.
Sigh. We have a consult with cardiology this week. I'll take a moment to speak to him privately. And I'll let her eat as she likes. She won't get much sodium at our table, and she seems to like our food anyway. Since she moved in she hasn't been back in the hospital for heart failure (she was in twice in the month before she moved in). If allowing treats does decrease her quantity of life, I think she's okay with it. After all, if she never worried about that before she got dementia I have a lifestyle precedent that I can follow. And I guess I'll have the pacemaker fixed if they suggest it - it IS what she would want.
But I want my kids to know - I don't want to do it this way when it's my turn.
DeeDee
She asks almost every question at least four times. The commonest question we hear is "What's for dinner?" She'll ask over and over and it doesn't really matter what we say. So we make things up.
"What's for dinner?"
"Hamsters."
"Hamsters??"
"Yes, we got them in Hamsterdam." At which point we are singing variations on Boy Scout songs: "Hamster, Hamster, damdamdam..." (If you don't have THAT tune stuck in your head for the rest of the day, you had a sad and lonely childhood.)
She notices when the grandkids aren't here. She asks about babies every day. Since they are only here on weekends for dinner, that adds up to a lot of questions about babies and where they are located, and our answers vary from, "With their parents" to "Off to see the Wizard" in scope.
It's not mean if she can't remember, is it? Well, maybe LOL.
I've heard from friends that hygiene and dementia are not friends with each other. What is it that makes the forgetful seem to think that showers are freezing cold and quite possibly toxic? It's worse than the preteen I'm-not-dirty-I-bathed-four-days-ago phase. And since the passage of time means nothing to her at this point (she asked me yesterday during my weekly changing-of-the-linens why on earth I do that every single day), she thinks I'm trying to shove her into the shower daily. Since showering her takes well over an hour (cajoling, wheedling, bribing, demanding, shower plus un/dressing and hairstyling) I'd be insane to try it daily.
Changes in routine are not a problem. She like going out to go to the doctor but she wants a double Quarter Pounder with Cheese each time. And since she can't remember whether she's eaten or not, she keeps on asking. And asking. And asking. Not to mention that the LAST thing her cardiologist would want her eating is a QPC. With fries. Add extra sodium, please. Lord.
I want her to enjoy life as best she can while she can. We eat well, and sometimes adjust her water pills to compensate for the extra salt if we get a pizza or some Chinese (and trust me, she eats far less of that under our supervision than she did when she lived alone!). Balancing her heart failure against her dying kidneys against her memory loss is a fine, delicate thing.
I have had many conversations about end-of-life care with my mom, the majority of which took place long before the dementia was well-entrenched. In every single conversation she voted for quantity of life over quality. Respirator? Yes. CPR? Yes. Feeding tube? HELL, yes. No matter what? Even if you are so far gone you don't know you are there? YES.
Ugh. This stands in direct opposition to what common sense, and common decency would dictate. I don't understand how someone who spent years as a nurses' aid in a nursing home could think this way. But it IS how she thinks. So how do I apply it?
If I let her eat the way she wants to she'll be in the hospital by Friday and dead by the end of the year. Restricting her is practical, but it takes away the only clear joy she has left in life. She has a broken pacemaker wire (one of two - the other is pacing for now). Repair/replace and risk surgical complications that would worsen her quality of life? Leave it alone and risk decreasing her quantity of life? She's no longer competent to decide for herself, and I'm stuck with a promise made as health care proxy to do what SHE would want to do. According to her guidelines I should never let her eat anything she likes again AND replace the pacing wire.
Sigh. We have a consult with cardiology this week. I'll take a moment to speak to him privately. And I'll let her eat as she likes. She won't get much sodium at our table, and she seems to like our food anyway. Since she moved in she hasn't been back in the hospital for heart failure (she was in twice in the month before she moved in). If allowing treats does decrease her quantity of life, I think she's okay with it. After all, if she never worried about that before she got dementia I have a lifestyle precedent that I can follow. And I guess I'll have the pacemaker fixed if they suggest it - it IS what she would want.
But I want my kids to know - I don't want to do it this way when it's my turn.
DeeDee
Saturday, September 21, 2013
New Eyes.....
My glasses are getting a bit worn. I think it's been two years since I last had an eye exam and got a new pair, so the chips and scratches are hardly surprising.
So I went for an eye exam.
"Did you get these glasses here or somewhere else?" "Here." "And you say it's been two years since your last exam?" "Well, I think so - I've been kind of busy."
My last exam was in 2009.
Looking back, I can kinda sorta remember that I was supposed to go for an exam in December of 2010, right smack dab in the middle of Migraine Hell. I'm sure that I couldn't face having bright lights flashed on my retinas, so I put it off. About the time I might have considered rescheduling, Babygirl got sick.
There probably is no end to the things that got back-burnered when our lives turned upside down and inside out. I know I've been pretty good about keeping up with my doctor visits (although I'm thinking that I may be just a little overdue now). I managed church, work, doctor visits, Hubby's surgeries, and a bunch of other stuff during the two and half years we've been dealing with this.
But I'll never know, unless I trip over it, what things got so deeply buried that they may never be cared for. I'm guessing many of my good friends think of me fondly and wonder if I'm still alive (so to speak). I've not been a good or reliable friend for a while, certainly. I've been on the taking rather than giving end of things, absolutely. And you know what? I think I don't mind. And I'm hoping they don't either. Anyone who wants can give us a shout and we'll try to get back in the swing of things.
Priorities around here have changed dramatically. We circled the wagons and kept them that way. It's a testament to how our lives have been that I consciously rejoiced today because it's been over TWO MONTHS since any one of us was admitted to a hospital. I'm still doing the happy-happy joy-joy dance over the fact that I don't have to leave my home to go to Philly for THREE WHOLE MONTHS. Babygirl's ongoing needs mean that I spend a substantial portion of each weekend cleaning. My Mom's needs mean that I have less down time in the morning, and less freedom to just run away from home whenever I want. I rarely have time for the type of introspection that would uncover anything that I am missing.
But there are a couple.
Music. Babygirl and I have an ever-growing playlist, and it's wonderful to belt out "Just give me a reason, just a little bit's enough..." with Pink, or "New York state of mind" with Billy Joel, but it isn't choir music. I miss making music with other people, and the depth of worship it inspires. If someone else would run the choir I'd join.
Adult friends. We've begun having people come over for dinner here and there, and I hope to expand our guest list a bit. I'd like to get to know some people we don't know well, and re-affirm old friendships. As witty as Babygirl has become, and as acerbically funny Hubby can be, it's nice to bring in some folks from the outside again.
Wine with Citygirl. Her years in the city and recent move to the west coast have made it harder for us to stay connected. Phone only takes us so far, and I truly, truly miss her. She's having a great time working for a couple of wineries and excited about starting classes this week. It is wonderful, absolutely amazing to have a daughter grow up to be such a great friend.
On the flip side, I have JuJuBee and Curlygirl here at home. I spend more time with them now than I did when they lived at home in high school, and I'm grateful for time with grandkids and my girls. Having little people call me 'Grandma' (or something that sounds kind of like that) is such an amazing blessing.
So I guess it was time for me to get new glasses. Time to look around with new eyes at the life we have now. It's a good life, better than I would have expected. We're walking a tough road, aware that there are tougher ones and thankful for the blessings we have. I'm amazed at how light it is looking through these new eyes, grateful for small blessings that I might not have appreciated without the struggles we've endured.
DeeDee
PS I would suggest, for future reference, driving home with the OLD glasses and adjusting to the new somewhere other than behind the wheel. Experience speaks.
So I went for an eye exam.
"Did you get these glasses here or somewhere else?" "Here." "And you say it's been two years since your last exam?" "Well, I think so - I've been kind of busy."
My last exam was in 2009.
Looking back, I can kinda sorta remember that I was supposed to go for an exam in December of 2010, right smack dab in the middle of Migraine Hell. I'm sure that I couldn't face having bright lights flashed on my retinas, so I put it off. About the time I might have considered rescheduling, Babygirl got sick.
There probably is no end to the things that got back-burnered when our lives turned upside down and inside out. I know I've been pretty good about keeping up with my doctor visits (although I'm thinking that I may be just a little overdue now). I managed church, work, doctor visits, Hubby's surgeries, and a bunch of other stuff during the two and half years we've been dealing with this.
But I'll never know, unless I trip over it, what things got so deeply buried that they may never be cared for. I'm guessing many of my good friends think of me fondly and wonder if I'm still alive (so to speak). I've not been a good or reliable friend for a while, certainly. I've been on the taking rather than giving end of things, absolutely. And you know what? I think I don't mind. And I'm hoping they don't either. Anyone who wants can give us a shout and we'll try to get back in the swing of things.
Priorities around here have changed dramatically. We circled the wagons and kept them that way. It's a testament to how our lives have been that I consciously rejoiced today because it's been over TWO MONTHS since any one of us was admitted to a hospital. I'm still doing the happy-happy joy-joy dance over the fact that I don't have to leave my home to go to Philly for THREE WHOLE MONTHS. Babygirl's ongoing needs mean that I spend a substantial portion of each weekend cleaning. My Mom's needs mean that I have less down time in the morning, and less freedom to just run away from home whenever I want. I rarely have time for the type of introspection that would uncover anything that I am missing.
But there are a couple.
Music. Babygirl and I have an ever-growing playlist, and it's wonderful to belt out "Just give me a reason, just a little bit's enough..." with Pink, or "New York state of mind" with Billy Joel, but it isn't choir music. I miss making music with other people, and the depth of worship it inspires. If someone else would run the choir I'd join.
Adult friends. We've begun having people come over for dinner here and there, and I hope to expand our guest list a bit. I'd like to get to know some people we don't know well, and re-affirm old friendships. As witty as Babygirl has become, and as acerbically funny Hubby can be, it's nice to bring in some folks from the outside again.
Wine with Citygirl. Her years in the city and recent move to the west coast have made it harder for us to stay connected. Phone only takes us so far, and I truly, truly miss her. She's having a great time working for a couple of wineries and excited about starting classes this week. It is wonderful, absolutely amazing to have a daughter grow up to be such a great friend.
On the flip side, I have JuJuBee and Curlygirl here at home. I spend more time with them now than I did when they lived at home in high school, and I'm grateful for time with grandkids and my girls. Having little people call me 'Grandma' (or something that sounds kind of like that) is such an amazing blessing.
So I guess it was time for me to get new glasses. Time to look around with new eyes at the life we have now. It's a good life, better than I would have expected. We're walking a tough road, aware that there are tougher ones and thankful for the blessings we have. I'm amazed at how light it is looking through these new eyes, grateful for small blessings that I might not have appreciated without the struggles we've endured.
DeeDee
PS I would suggest, for future reference, driving home with the OLD glasses and adjusting to the new somewhere other than behind the wheel. Experience speaks.
Friday, September 20, 2013
The Point of the Adolescent Clinic......
The Transplant Clinic is absurdly efficient. Check in, pick up lab orders, get blood drawn upstairs, eat, return and get put in a room. Usually we arrive shortly after 7:30 and get out by 9:30 - 10 on a bad day. Not so the Adolescent Clinic.
To give as much leeway as possible, we were gone for an hour to Neurology. Had that not happened we'd have left by 12:30.
So what the heck is the point of all the extra people? And all the extra time? And what is the bill for this going to look like? Usually it's about $400.
The point is simple: Keep the kidney alive.
I've mentioned before that 14 and 19 are common rejection ages. CHOP is constantly doing studies to figure out why, and what can be done to make sure it doesn't happen to their kids. So there were some common themes to the questions asked of Babygirl yesterday. And yes, for the first time, all questions were addressed to HER, not me.
"Do you know why you have been asked to join this clinic?" Explanations were given about the need to gain control over her medical care. One provider said, "It's like learning to drive. No one would just hand you the keys and expect you drive on the turnpike. You need an adult sitting on the seat next to you while you practice in the parking lot for a while." Our job as parents are to include her in pill sorting, set up HER phone to get the text message reminders, and gradually allow her more responsibility over her care.
"How is school going? And what are your friends like?" (And privately, to me, "Do you have any concerns about her friends?") Teaching a kid that choosing good friends and avoiding dangerous ones is challenging for all of us. It's good to have some backup on this one. I'm guessing that kids with drug-using troublemaker friends might have some problems with compliance?
"Do you know what medicines you are taking?" Yes, all but two - the blood pressure med and the bicarbonate. "Do you know how much you take? How often?" Not so much, and pretty much, respectively. In an emergency, you need to know what you are taking, exactly. This would clearly help avoid med errors at other hospitals. And it would certainly help her transition to another doctor if needed.
Babygirl tells me that the questions asked behind closed doors (in the 15 minutes I was thrown out of the room LOL) were still about her friends and social life. I guess they decided that bluntly asking if she has sex or uses drugs was not on their list yesterday.
The psychiatrist spent some time exploring the depth of her friendships and the changes that began happening with dialysis. Babygirl used to have a lot of sleepovers both at home and at friends' homes. That stopped completely with dialysis. She really couldn't go overnight elsewhere without a lot of preparation, and she didn't want her friends to see the bedside commode and dialysis equipment in her room. She still doesn't want friends to come over. I'm sure the concern here is social isolation and depression. The doc was relieved to hear about her frequent contact with her best buddies - her sisters - and in the end seemed satisfied with the quality of her life (either that or he has a phenomenal poker face).
Adolescent Clinic is a twice-yearly event. So if it weren't for the Hypertension Clinic, we'd have a nice short visit in between. And THREE MONTHS!!! Whoot! It's a record! I texted the date of our next appointment to my sister-in-law and she was quite surprised. We didn't even get an order for blood work in between.
I guess we can live with longer, far more infrequent visits. Yes, yes we can.
DeeDee
To give as much leeway as possible, we were gone for an hour to Neurology. Had that not happened we'd have left by 12:30.
So what the heck is the point of all the extra people? And all the extra time? And what is the bill for this going to look like? Usually it's about $400.
The point is simple: Keep the kidney alive.
I've mentioned before that 14 and 19 are common rejection ages. CHOP is constantly doing studies to figure out why, and what can be done to make sure it doesn't happen to their kids. So there were some common themes to the questions asked of Babygirl yesterday. And yes, for the first time, all questions were addressed to HER, not me.
"Do you know why you have been asked to join this clinic?" Explanations were given about the need to gain control over her medical care. One provider said, "It's like learning to drive. No one would just hand you the keys and expect you drive on the turnpike. You need an adult sitting on the seat next to you while you practice in the parking lot for a while." Our job as parents are to include her in pill sorting, set up HER phone to get the text message reminders, and gradually allow her more responsibility over her care.
"How is school going? And what are your friends like?" (And privately, to me, "Do you have any concerns about her friends?") Teaching a kid that choosing good friends and avoiding dangerous ones is challenging for all of us. It's good to have some backup on this one. I'm guessing that kids with drug-using troublemaker friends might have some problems with compliance?
"Do you know what medicines you are taking?" Yes, all but two - the blood pressure med and the bicarbonate. "Do you know how much you take? How often?" Not so much, and pretty much, respectively. In an emergency, you need to know what you are taking, exactly. This would clearly help avoid med errors at other hospitals. And it would certainly help her transition to another doctor if needed.
Babygirl tells me that the questions asked behind closed doors (in the 15 minutes I was thrown out of the room LOL) were still about her friends and social life. I guess they decided that bluntly asking if she has sex or uses drugs was not on their list yesterday.
The psychiatrist spent some time exploring the depth of her friendships and the changes that began happening with dialysis. Babygirl used to have a lot of sleepovers both at home and at friends' homes. That stopped completely with dialysis. She really couldn't go overnight elsewhere without a lot of preparation, and she didn't want her friends to see the bedside commode and dialysis equipment in her room. She still doesn't want friends to come over. I'm sure the concern here is social isolation and depression. The doc was relieved to hear about her frequent contact with her best buddies - her sisters - and in the end seemed satisfied with the quality of her life (either that or he has a phenomenal poker face).
Adolescent Clinic is a twice-yearly event. So if it weren't for the Hypertension Clinic, we'd have a nice short visit in between. And THREE MONTHS!!! Whoot! It's a record! I texted the date of our next appointment to my sister-in-law and she was quite surprised. We didn't even get an order for blood work in between.
I guess we can live with longer, far more infrequent visits. Yes, yes we can.
DeeDee
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