We've arrived safely in our Philly home. We had planned on stopping at the amusement park, but it's closed for a private party (and a BIG one to judge by the number of cars!). It's closed on weekdays now, so we'll have to wait and see about another visit before it closes for the winter.
But the story for the day....
Our church had a picnic today. The service was at a local park, under a picnic shelter, with lunch catered by a local restaurant that specializes in grilled chicken. My mom actually decided to come - food tends to bring her out. She ended up seated next to Dick, the father (-in-law) of a couple of our friends.
They hit it off well. He told her the same three stories 8 times each and she thought each one was a new and different story. Dementia Kismet, if you will. As we were leaving the park, my mom started to cry. She lamented the loss of married life - someone to make tea for, someone who valued her skills. She and my dad have been divorced now longer than the 25 years they were married, and I suspect that they both miss each other. Each willingly admits that the years when my brothers and I were young were the best of their lives.
She asked if Dick was married. He was widowed a few years ago. My mom then went on to tell me that she'd happily marry him, since he's single.
I didn't know whether to laugh or cry - the mental picture of two demented old people just made it hard to avoid doing either thing. Would either of them remember that they were married? Would it be like '50 First Dates' every morning? Would we need to make videotapes every day?
Maybe the videotape thing would be a good idea......
Sigh. I can't wait to see the look on my friends' faces when I tell them her scheme LOLOL.
Last year after this picnic I ended up taking Babygirl to the emergency room. (http://kidneedsakidney.blogspot.com/2011/07/week-9-er.html). This time she played, ran around, ate, drank, and came home pain-free.
It's a good day.
DeeDee
Sunday, September 9, 2012
Shaving.....
Among the many things that transplant patients need to think about are the many potential sources of infection. Some are obvious: Don't clean the cat box. Some are clear when you think about it: No raw veggies, scrub all the fruit. Some seem a bit obscure: No cold cuts. Babygirl and I have had plenty of talks about all of these. But today we tackled a tougher issue.
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Beware. This was an icky conversation.
Most people are aware of MRSA (methicillin resistant Staph. aureus). This mutant skin germ developed in part because of overuse of antibiotics. Remember when everybody got a shot of penicillin 'just in case'? Or when every runny nose got amoxicillin or Ceclor? The germs remember. So now what was once a harmless commensile germ has become aggressive. Not only is MRSA harder to treat that ordinary Staph. aureus, it's MUCH more likely to cause infection. Studies vary, but it's probably safe to say that more than 1/4 of us are colonized with this bug at some point.
Now consider the current "war on pubic hair" (http://www.guardian.co.uk/commentisfree/2012/aug/07/pubic-hair-has-job-stop-shaving). It used to be that people shaved faces, armpits and legs. Now there really isn't any part of the body that isn't exposed to razors. And razors cause cuts - anything from microabrasions to flat-out needs-stitches lacerations. And applying a razor to a body part that can't actually be easily seen by the razor wielder? Waxing is not really any better. Yanking a hair out by the roots breaks the skin surface as well.
Doctors see a LOT of abscesses, far more in the last few years than we ever saw before. And we are seeing a tremendous increase in the number of abscesses located on the labia, inner thighs and buttocks, as well as the axillae. I don't go a week in my office without treating at least one, and the ER doctors see them at least daily. I've seen them spread inward to infect artificial joints. I've seen them spread through the bloodstream to the liver. And I've more than once had patients who developed severe kidney infections from them. And most of those people were healthy to begin with - not on Babygirl's immunosuppressants.
So today I discussed shaving habits with Babygirl. I frankly described abscesses and how they are treated (cut a hole, squeeze the ick out, insert packing and re-pack daily), and asked her to consider whether shaving was worth the risk of having total strangers looking at her private parts to see how bad the infection is. Or whether having an exquisitely painful lump the size of a walnut or bigger right where she has to sit seems like a good idea.
Like many parental warnings, I'm not sure whether it was an in-one-ear-out-the-other conversation, or something taken to heart (although to judge by the appalled look on her face I think and impression was made).
When I had my roses-and-ice-cream dreams about motherhood, I never imagined having to broach such a subject. Heck, they never even covered this in med school, let alone What to Expect While You're Expecting. I'd rather talk about teachers in Spandex.
DeeDee
Saturday, September 8, 2012
Stories....
Our day here always gives us something to ponder, wonder or laugh at. I've been fortunate enough to have lived a life with travel, family, college and friends - to the extent that it seems I always have a story to tell! A recent post at Single Dad Laughing (http://www.danoah.com/2012/09/those-who-live-life-will-always-have-stories-to-tell.html) discusses the fact that all of us who actually live our lives (as opposed to vicariously living through TV and video games!) will always run into a story.
I think that it IS about living, about being present in your own life. To me, though, it is also about noticing that there is a story being told. As Babygirl's Mom, I could truly become inured to the peculiarities of her mind and heart. The enemy of the story is the underlying belief that nothing that we do is of any interest to anyone else. The enemy of the story is coming to think that you or your kid are 'average' and 'uninteresting.'
I don't think I've ever met a person whose story wasn't amazing in some way. But I think that we've become out of practice at telling stories. We've lost the gift of HEARING stories. We forget to truly listen for those belly-laughing, heart-wrenching, adrenal-squeezing stories that are truly, truly truly the most amazing parts of our everyday lives.
Every 'ordinary' life is full of stories. I have told my children regularly that only unintelligent people are ever bored, but I think I got it wrong. Only unimaginative people are ever bored. And more to the point, whenever I think that what is happening inside my own mind is more important than what is going on with the people around me? When I am at my most selfish? Then I am most likely to fail to see all that is beautiful, holy, joyful and laughable in the world around me.
So today I will make a conscious effort to SEE. To be where I am, to be with my family and loved ones. To hear the stories. To rejoice in the storms, to cry with the grieving, to remember that each person I meet has something awesome to teach me if I'm willing to learn.
I want to come home with a new story.
DeeDee
I think that it IS about living, about being present in your own life. To me, though, it is also about noticing that there is a story being told. As Babygirl's Mom, I could truly become inured to the peculiarities of her mind and heart. The enemy of the story is the underlying belief that nothing that we do is of any interest to anyone else. The enemy of the story is coming to think that you or your kid are 'average' and 'uninteresting.'
I don't think I've ever met a person whose story wasn't amazing in some way. But I think that we've become out of practice at telling stories. We've lost the gift of HEARING stories. We forget to truly listen for those belly-laughing, heart-wrenching, adrenal-squeezing stories that are truly, truly truly the most amazing parts of our everyday lives.
Every 'ordinary' life is full of stories. I have told my children regularly that only unintelligent people are ever bored, but I think I got it wrong. Only unimaginative people are ever bored. And more to the point, whenever I think that what is happening inside my own mind is more important than what is going on with the people around me? When I am at my most selfish? Then I am most likely to fail to see all that is beautiful, holy, joyful and laughable in the world around me.
So today I will make a conscious effort to SEE. To be where I am, to be with my family and loved ones. To hear the stories. To rejoice in the storms, to cry with the grieving, to remember that each person I meet has something awesome to teach me if I'm willing to learn.
I want to come home with a new story.
DeeDee
Friday, September 7, 2012
Week Seventy-two - First Day Of School.....
The first week of school is always a bit hectic. In the office, there is a sudden rush of school physicals. New state rules bring a flurry of impatient calls from moms whose kindergarteners and sixth graders need vaccines to even get in on the first day. The fact that these kids aren't up-to-date appears to be MY fault despite the fact that those vaccines WOULD have been given if mom had made/showed up for the child's most recent physical appointment! And for those who did have physicals done, the moms need that translated onto a school form - a different form for each local school (a process which is getting better since our state recently issued a standardized form!).
Clothes. Shoes. Supplies according to the published list. Lunches. Pony tail holders. New earrings (moustaches to go with the ongoing Paris theme). Shop for more supplies based on the TEACHERS' lists.
So last night we went out to brave the crowds of parents and kids who are all in the same boat we are. We had dinner at 5 Guys, a special treat usually reserved for the 5 Guys restaurant at the beach. And as always, we discussed how our day went.
Babygirl went on at excited length about her new teachers, her new classrooms, and her friends. But talking to Babygirl requires careful listening, and occasional mental translation, since she apparently learned to speak English at the feet of Miss Malaprop:
"MOM! There's a new teacher! No! He's an aide. And he wears SPANDEX to school!"
Well. This is, indeed, news. Hubby and I pause, each of us with mental pictures of a male teachers' aide in Spandex. He either looks REALLY good or VERY bad, and either way, it seems....inappropriate. Especially for a middle school. Um....."Spandex? On the bottom or on top?" I mean, a Spandex shirt wouldn't be quite as bad, right? Either way, I might be calling the school.
Puzzled silence. "Well, they're on top mostly....."
Thoughtful mental translation. "Do you mean suspenders?"
Of course she did. Black suspenders. She'll keep us updated if the color changes.
Oh. My. My sides hurt and I have cramps in my cheeks. I LOVE being a mom!
DeeDee
Clothes. Shoes. Supplies according to the published list. Lunches. Pony tail holders. New earrings (moustaches to go with the ongoing Paris theme). Shop for more supplies based on the TEACHERS' lists.
So last night we went out to brave the crowds of parents and kids who are all in the same boat we are. We had dinner at 5 Guys, a special treat usually reserved for the 5 Guys restaurant at the beach. And as always, we discussed how our day went.
Babygirl went on at excited length about her new teachers, her new classrooms, and her friends. But talking to Babygirl requires careful listening, and occasional mental translation, since she apparently learned to speak English at the feet of Miss Malaprop:
"MOM! There's a new teacher! No! He's an aide. And he wears SPANDEX to school!"
Well. This is, indeed, news. Hubby and I pause, each of us with mental pictures of a male teachers' aide in Spandex. He either looks REALLY good or VERY bad, and either way, it seems....inappropriate. Especially for a middle school. Um....."Spandex? On the bottom or on top?" I mean, a Spandex shirt wouldn't be quite as bad, right? Either way, I might be calling the school.
Puzzled silence. "Well, they're on top mostly....."
Thoughtful mental translation. "Do you mean suspenders?"
Of course she did. Black suspenders. She'll keep us updated if the color changes.
Oh. My. My sides hurt and I have cramps in my cheeks. I LOVE being a mom!
DeeDee
Tuesday, September 4, 2012
End of Summer.....
It always amazes me how my view and Babygirl's differ regarding how she's doing and how she feels. I look back at this summer and I think, "Man, this was easier than LAST summer."
Last summer we were learning to deal with a chronically ill child. Last summer we hit the ER for an episode of painful dehydration. Last summer our beach vacation was interrupted daily by appalling bad news and medical updates. Last summer we watched Babygirl begin her ongoing, agonizing stint on dialysis. Last summer we gave up sleep for a month.
Yup, this was a better summer.
Now swing to Babygirl's perspective. We didn't go to the beach. She didn't go to church camp. We spent horseback camp week in the hospital. Her best friend was out of town for amusement park day. She got to enjoy all of those things last summer, so she sees THIS summer as a bit of a drag. Besides, if you've already been out of school for two months before vacation begins, what fun is being off MORE?
Yup, last summer was better.
DeeDee
Last summer we were learning to deal with a chronically ill child. Last summer we hit the ER for an episode of painful dehydration. Last summer our beach vacation was interrupted daily by appalling bad news and medical updates. Last summer we watched Babygirl begin her ongoing, agonizing stint on dialysis. Last summer we gave up sleep for a month.
Yup, this was a better summer.
Now swing to Babygirl's perspective. We didn't go to the beach. She didn't go to church camp. We spent horseback camp week in the hospital. Her best friend was out of town for amusement park day. She got to enjoy all of those things last summer, so she sees THIS summer as a bit of a drag. Besides, if you've already been out of school for two months before vacation begins, what fun is being off MORE?
Yup, last summer was better.
DeeDee
Sunday, September 2, 2012
Miracles R Us......
Maintaining a fleet of elderly cars is, in many ways, more cost-effective than purchasing a new vehicle. Hubby and I review the numbers periodically, and always come to the conclusion that until we can save a few thousand bucks and pay for a newer used car, we are better off limping along with our two sweethearts, Rhonda and the Goose. Both will hold a large number of people (seven and eight, respectively), and both are relatively low mileage for their ages (18 and 8, respectively). And because they are old, the insurance is a deal.
But every now and then you get one of those runs of bad car Karma that make you shake your head and wonder if this is actually the best plan.
Both cars needed air conditioning repairs AND new starters this summer. Rhonda has needed an assortment of minor things from light bulbs to tires and to a new windshield (that one, at least, was covered by insurance). The recent electrical outage was an affordable alternator replacement. While Hubby was picking Rhonda up from the shop from THAT repair, we were merrily driving off in the Goose toward an amusement park.
Twenty minutes after Hubby drove away from the mechanic, he stopped at Walmart. When he came out and began to drive, the brakes failed ENTIRELY at the first stop sign in the lot. He's a quick thinker, thank God, and he managed to corner quickly without hitting anyone or anything and drifted to a stop. One tow truck ride to the mechanic later, it was discovered that the master brake cylinder had failed. Aside from the cost, there is the pure terror factor.
We could have fit everyone into Rhonda for the trip down. The only real reason we needed the extra seating was because of my nephew's car crash - we needed to be able to give him and his sister a ride to and from the park instead of having them drive themselves. Twenty minutes down the road in the direction we were going would have been on the highway, going 70 mph.
We could easily have died - me, Babygirl, the grandkids, all of us.
Hubby is still having trouble sleeping.
DeeDee
But every now and then you get one of those runs of bad car Karma that make you shake your head and wonder if this is actually the best plan.
Both cars needed air conditioning repairs AND new starters this summer. Rhonda has needed an assortment of minor things from light bulbs to tires and to a new windshield (that one, at least, was covered by insurance). The recent electrical outage was an affordable alternator replacement. While Hubby was picking Rhonda up from the shop from THAT repair, we were merrily driving off in the Goose toward an amusement park.
Twenty minutes after Hubby drove away from the mechanic, he stopped at Walmart. When he came out and began to drive, the brakes failed ENTIRELY at the first stop sign in the lot. He's a quick thinker, thank God, and he managed to corner quickly without hitting anyone or anything and drifted to a stop. One tow truck ride to the mechanic later, it was discovered that the master brake cylinder had failed. Aside from the cost, there is the pure terror factor.
We could have fit everyone into Rhonda for the trip down. The only real reason we needed the extra seating was because of my nephew's car crash - we needed to be able to give him and his sister a ride to and from the park instead of having them drive themselves. Twenty minutes down the road in the direction we were going would have been on the highway, going 70 mph.
We could easily have died - me, Babygirl, the grandkids, all of us.
Hubby is still having trouble sleeping.
DeeDee
Saturday, September 1, 2012
Happy Birthday.......
Babygirl is a teenager!
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
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