It's a great thing when a party happens spontaneously. Curlygirl and Boo'sMommy needed to do some laundry, so they brought Boo and Squeaker along. Squeaker's big brother DoodleBug (seriously, I am NOT responsible for that nickname!) and his daddy were also here. Since we had a crowd, we grilled burgers and dogs, cut up a watermelon, grilled some veggies and took the entire meal outside.
We have an old rope swing, and it was nice to see yet another generation of swingers! The weather was lovely, the food and company of good quality, and I only got spit up on twice. Boo discovered that walking on grass is not quite the same as walking indoors. And of course she discovered that she rather likes the taste of grass, although she preferred graham crackers.
Graham crackers? Well, of course! You can't have a holiday weekend picnic without s'mores! DoodleBug got over his dislike of sticky fingers and manfully chowed down at least three. Babygirl loves s'mores, so if we can't manage camping and a real fire, marshmallows melted over the grill will do just fine.
Evening's over, laundry done, babies taken to their homes. I'm exhausted, but relaxed. The only dishes were the silverware and the grill basket the veggies cooked in. Let's here it for paper plates and Solo cups!
DeeDee
Saturday, May 26, 2012
Friday, May 25, 2012
Aw, Crap - Part Two......
We repeated blood work yesterday morning. Late yesterday afternoon the nurse practitioner called with the results.
Babygirl's creatinine is still 1.1. Re-hydrating her did not help, so there is great concern about why the kidney is so unhappy. They suspect it may be the tacrolimus, which prevents rejection but can, in and of itself, cause kidney damage. They want us to come to Philadelphia on Tuesday morning, instead of next Monday (so much for "see you in two weeks"!) to have STAT blood work. If her creatinine remains elevated, she will be admitted overnight for a kidney biopsy. Oh, yippee.
And because that really isn't quite enough crappy news, her neutrophil count has dropped some more. So no church on Sunday, no going out in public, no friends over and so on. And because they think her OTHER anti-rejection medication is causing that, we've had to decrease the dose again, which logically means that her kidney is more likely to be rejected, so we're more likely to end up needing that biopsy.
So last night hubby and I decided to pretend it was a weekend. We barbecued, and had a couple of drinks and got silly. At one point I asked him, "Is there any problem alcohol can't solve?" He replied, "Alcoholism." I laughed myself stupid. I love that guy!
DeeDee
Babygirl's creatinine is still 1.1. Re-hydrating her did not help, so there is great concern about why the kidney is so unhappy. They suspect it may be the tacrolimus, which prevents rejection but can, in and of itself, cause kidney damage. They want us to come to Philadelphia on Tuesday morning, instead of next Monday (so much for "see you in two weeks"!) to have STAT blood work. If her creatinine remains elevated, she will be admitted overnight for a kidney biopsy. Oh, yippee.
And because that really isn't quite enough crappy news, her neutrophil count has dropped some more. So no church on Sunday, no going out in public, no friends over and so on. And because they think her OTHER anti-rejection medication is causing that, we've had to decrease the dose again, which logically means that her kidney is more likely to be rejected, so we're more likely to end up needing that biopsy.
So last night hubby and I decided to pretend it was a weekend. We barbecued, and had a couple of drinks and got silly. At one point I asked him, "Is there any problem alcohol can't solve?" He replied, "Alcoholism." I laughed myself stupid. I love that guy!
DeeDee
Thursday, May 24, 2012
Week Fifty-seven - The Changing of the Password....
It's been over three months since I returned to work following Babygirl's transplant. I know that it's so because I had to change my office passwords today. I put new passwords in immediately following my return to work because they had expired while we were in Philadelphia, and we are automatically prompted to change them every twelve weeks or so.
So, good-bye, KdnyDnr1. Farewell to my daily reminder to pray for Jorge's family. And good-bye as well to the unrealistic hope that having a new kidney would make life 'easier' for us. We still have a chronically ill little girl, and for us the vigilance really hasn't changed a lot.
But thanks be to God, it has changed for HER. She feels SO much better that it's a jolt, a shock, a blessed reminder of who and what she once was. Even today, unable to go to school, she's feeling so much like herself that she's rather angry that she can't go!
And I don't need more of a daily reminder to pray than that.
DeeDee
So, good-bye, KdnyDnr1. Farewell to my daily reminder to pray for Jorge's family. And good-bye as well to the unrealistic hope that having a new kidney would make life 'easier' for us. We still have a chronically ill little girl, and for us the vigilance really hasn't changed a lot.
But thanks be to God, it has changed for HER. She feels SO much better that it's a jolt, a shock, a blessed reminder of who and what she once was. Even today, unable to go to school, she's feeling so much like herself that she's rather angry that she can't go!
And I don't need more of a daily reminder to pray than that.
DeeDee
Tuesday, May 22, 2012
Aw, Crap......
I finally got a call from our nurse practitioner about yesterday's lab results. It's not pretty. The only really good news is that her tacrolimus level is adequate and not high enough to be the cause of all the bad news.
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
Monday, May 21, 2012
See You In Two Weeks.....
Our appointment in Philly this morning was, well, disorganized. We arrived early, as usual. The usual receptionist, however, did not. And while her replacement was a lovely, lovely woman, there was nothing she could do about the fact that our doctors hadn't written any orders for blood work. And I do mean, not ANY. Not for us, not for half of the other clinic patients. So we had to wait for a nurse practitioner to arrive and write orders. No sweat - we went and had breakfast, figuring that once we got the orders, we'd take the meds. How long could it take, after all?
Turns out, a while.
The way it usually works is that we arrive at the lab just before it opens and are first or second in line. If you get your orders late, you end up waiting. And waiting. And waiting..... If you get your orders early, do your blood work on time, and then see the doc, your test results are almost all ready. If you get them late, not so much.
In between all of this, we met with a study coach and received our computerized pill sorter. I underestimated when I said it was the size of a laptop. It's the size of an OLD laptop, only thicker, and not quite as heavy. It's going to live on top of our microwave, and there isn't a lot of room to spare. It holds a week's worth of meds at a time, so I'll have to sort more often since I usually do two weeks' worth. For the first three months it will simply record what time we open it to take pills, and we will need to keep a record of times when we take pills out "to go." After three months, we will either continue to use it that way, or be assigned to a group that can get reminders (either from the computer or by text message or phone) to take our meds.
As a ramp-up to this, the study coordinator questioned Babygirl about her medications. Two weeks ago they made major changes in doses and markedly decreased the number of pills she's taking, and I haven't drilled her on her meds since. She made a lot of mistakes about what and how much she takes, and they were only asking about three of them, so we need to work on that. I filled the sorter in the office today, but she'll be doing it with me from here out.
The visit with the doc was a bit crazed as well. One nurse practitioner was off, the other was sick and wearing a mask to see patients. The doc was also unexpectedly on her own and covering both the nephrology and the transplant clinic, training a resident as she went.
And as far as lab results are concerned, we only have one so far. Her creatinine is 1.1, up from 0.8 last week (normal for age 0.7 or less), so it's a bit scary. The rest was still pending, and they didn't call today with the results, so I sincerely hope they call tomorrow after their team meeting. They may need more blood work next week, but we will be able to do that here, or at worst, at the center 70 miles (instead of 192!) away.
The best part was scheduling our next appointment. We are officially, finally on biweekly visits! So we don't go back until June! Whoot!
DeeDee
Turns out, a while.
The way it usually works is that we arrive at the lab just before it opens and are first or second in line. If you get your orders late, you end up waiting. And waiting. And waiting..... If you get your orders early, do your blood work on time, and then see the doc, your test results are almost all ready. If you get them late, not so much.
In between all of this, we met with a study coach and received our computerized pill sorter. I underestimated when I said it was the size of a laptop. It's the size of an OLD laptop, only thicker, and not quite as heavy. It's going to live on top of our microwave, and there isn't a lot of room to spare. It holds a week's worth of meds at a time, so I'll have to sort more often since I usually do two weeks' worth. For the first three months it will simply record what time we open it to take pills, and we will need to keep a record of times when we take pills out "to go." After three months, we will either continue to use it that way, or be assigned to a group that can get reminders (either from the computer or by text message or phone) to take our meds.
As a ramp-up to this, the study coordinator questioned Babygirl about her medications. Two weeks ago they made major changes in doses and markedly decreased the number of pills she's taking, and I haven't drilled her on her meds since. She made a lot of mistakes about what and how much she takes, and they were only asking about three of them, so we need to work on that. I filled the sorter in the office today, but she'll be doing it with me from here out.
The visit with the doc was a bit crazed as well. One nurse practitioner was off, the other was sick and wearing a mask to see patients. The doc was also unexpectedly on her own and covering both the nephrology and the transplant clinic, training a resident as she went.
And as far as lab results are concerned, we only have one so far. Her creatinine is 1.1, up from 0.8 last week (normal for age 0.7 or less), so it's a bit scary. The rest was still pending, and they didn't call today with the results, so I sincerely hope they call tomorrow after their team meeting. They may need more blood work next week, but we will be able to do that here, or at worst, at the center 70 miles (instead of 192!) away.
The best part was scheduling our next appointment. We are officially, finally on biweekly visits! So we don't go back until June! Whoot!
DeeDee
Saturday, May 19, 2012
Week Fifty-six - The Letter......
I finally managed to compose a letter.
"Dear Jorge's Parents,
There is no way to thank you enough for the gift that Jorge gave our Babygirl. She was on dialysis for a long time, hooked to a machine all night, every night. Since she received Jorge's kidney, she has been able to sleep - no machine, and no pain.
Your description of Jorge, 'a boy very beloved, and with a big heart,' could be a description of Babygirl. I think they are a match in every way.
Babygirl is in 6th grade. Last week she was able to attend school for all 5 days for the first time all year.
Thank you is not enough.
Babygirl's parents
PS We would be very happy to hear more about Jorge"
I included two pictures of her, one recent, and one when she was younger.
I hope they write back. It took about five weeks for us to get the letter they wrote, so it may take quite a while.
DeeDee
"Dear Jorge's Parents,
There is no way to thank you enough for the gift that Jorge gave our Babygirl. She was on dialysis for a long time, hooked to a machine all night, every night. Since she received Jorge's kidney, she has been able to sleep - no machine, and no pain.
Your description of Jorge, 'a boy very beloved, and with a big heart,' could be a description of Babygirl. I think they are a match in every way.
Babygirl is in 6th grade. Last week she was able to attend school for all 5 days for the first time all year.
Thank you is not enough.
Babygirl's parents
PS We would be very happy to hear more about Jorge"
I included two pictures of her, one recent, and one when she was younger.
I hope they write back. It took about five weeks for us to get the letter they wrote, so it may take quite a while.
DeeDee
Wednesday, May 16, 2012
Going Camping.....
We camp each year for Memorial Day. Sometimes it's the only weekend we manage to get it together to camp, other times we go more frequently, but it's a major family tradition to fit in at least that one weekend.
We have many excellent, hilarious memories on these weekends. We're the lunatics who use a series of tarps staked to a big hill to make a 30-yard-long slip and slide, taking barrels of soapy water to the top of the hill by truck. We've had "Survivor" weekends for teenagers. We boil water in paper cups just to show kids it can be done. We sing around the campfire, and build glass sculptures out of fire-melted beer bottles. We staged a 300 pre-filled water balloon war against our children. We play adults vs kids softball.
Last year CityGirl's college graduation fell on Memorial Day Weekend. We rented a house near her campus, and had a fabulous three-day family party. It was awesome, but the only bad thing was that we never ended up camping at all that summer. Babygirl had just been diagnosed, and all of the insanity that surrounded her illness knocked us out of our usual patterns.
We won't be able to camp at our usual park this year. Last September's flood nearly washed it off the map, and the cleanup has been a huge challenge, especially since the town it's in was so horribly horribly affected as well. And even if they opened, the transplant team advised us against camping in any area recently flooded, to avoid the possibility of exposure to contaminants such as mold and untreated sewage.
Hubby and I have kicked this around a bit. We need running water. We'd like electricity. And we'd actually like more than just a three day weekend. Add to this the overall poor health of my parents, and we finally came to a decision: we're going to my home town to camp.
My Dad lives in the country, in a log cabin, surrounded by woods. He also has a hunting lodge a bit further out into the country. The lodge has no running water or electricity, but Babygirl has never been there. Since he's selling the place soon, we figure we can manage a night there, and then move to Dad's. I have no problem tenting in his yard!
I think we'll see a bit of the area I grew up in - take a couple of day trips to local parks, climb some rocks and take some pictures. We'll attend the local livestock auction and flea market. And I'm hoping I'll be able to convince my Dad and stepmom to come out to dinner with us at a casino about an hour away. Their buffet is AMAZING.
It's not beer around the campfire with a big group of friends and family. But it's a great way to catch up with my Dad, keep my Babygirl in a reasonably safe environment, and still make some very cool memories.
DeeDee
We have many excellent, hilarious memories on these weekends. We're the lunatics who use a series of tarps staked to a big hill to make a 30-yard-long slip and slide, taking barrels of soapy water to the top of the hill by truck. We've had "Survivor" weekends for teenagers. We boil water in paper cups just to show kids it can be done. We sing around the campfire, and build glass sculptures out of fire-melted beer bottles. We staged a 300 pre-filled water balloon war against our children. We play adults vs kids softball.
Last year CityGirl's college graduation fell on Memorial Day Weekend. We rented a house near her campus, and had a fabulous three-day family party. It was awesome, but the only bad thing was that we never ended up camping at all that summer. Babygirl had just been diagnosed, and all of the insanity that surrounded her illness knocked us out of our usual patterns.
We won't be able to camp at our usual park this year. Last September's flood nearly washed it off the map, and the cleanup has been a huge challenge, especially since the town it's in was so horribly horribly affected as well. And even if they opened, the transplant team advised us against camping in any area recently flooded, to avoid the possibility of exposure to contaminants such as mold and untreated sewage.
Hubby and I have kicked this around a bit. We need running water. We'd like electricity. And we'd actually like more than just a three day weekend. Add to this the overall poor health of my parents, and we finally came to a decision: we're going to my home town to camp.
My Dad lives in the country, in a log cabin, surrounded by woods. He also has a hunting lodge a bit further out into the country. The lodge has no running water or electricity, but Babygirl has never been there. Since he's selling the place soon, we figure we can manage a night there, and then move to Dad's. I have no problem tenting in his yard!
I think we'll see a bit of the area I grew up in - take a couple of day trips to local parks, climb some rocks and take some pictures. We'll attend the local livestock auction and flea market. And I'm hoping I'll be able to convince my Dad and stepmom to come out to dinner with us at a casino about an hour away. Their buffet is AMAZING.
It's not beer around the campfire with a big group of friends and family. But it's a great way to catch up with my Dad, keep my Babygirl in a reasonably safe environment, and still make some very cool memories.
DeeDee
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