There is nothing new to report. Babygirl has finished two of the three doses of steroids. They kept us here to observe for hypertension, and they are observing. And she has hypertension. Normal blood pressure in a girl her age should peak at about 110/70. She's running 146/94 for most of today. And without the increased dose of steroids, she runs 130/85 ON an antihypertensive. It's very frustrating to know that they should, for the sake of her long-term health, be doing better. I understand that the current appallingly high pressures are likely temporary. But her day-to-day blood pressure control has been poor from the beginning. When she was on dialysis we took her pressure every single day, and they were universally higher than they should be, and they did not treat them because the readings they got manually in the office were 'better' so they assumed our machine was not completely accurate. Since the transplant I confess to being utterly non-compliant with checking her pressure (and I invested in a manual cuff so I could be more 'accurate' LOL). Her blood pressure on office visits is almost always high, but now they assume that if we were checking at home we'd get better readings. The obvious solution to this is for me to be more aggressive about checking. I'm not sure why it's so hard for me to remember to do this.
I must do better.
Last night, shortly after I posted, my nephew called and asked how I was (bless his teenaged heart, he really cares how we are doing!). I mentioned that I need him to remind me to pack a bottle of wine and a bottle opener for next time! Five minutes later, he called me back and said, "We're coming in."
Forty-five minutes later they arrived. It's always good for Babygirl to have cousins stop in. By the third day of this hospital stay, and following a massive dose of steroids she was unspeakably hyperactive. They went upstairs. Downstairs. And again. And they allowed me a bit of time for some relatively adult conversation.
But the best part? They didn't have any wine handy, but they brought me a cranberry juice laced with vodka. On ice. Despite the less than comfortable sleep chair, I must say I slept very well. Thank God for adult beverages LOL.
DeeDee
Thursday, May 31, 2012
Wednesday, May 30, 2012
And the Results......
We got the biopsy results about 2 in the afternoon. She has significant lymphocytic infiltration in her kidney (well, Jorge's kidney) but no evidence of permanent rejection. In English? There is evidence of early acute rejection. There are no antibodies against the new kidney in her blood, but lymphocytes are the cells that make the antibodies. The fact that they are snooping around in her kidney, where they have no business doing more than passing through, is alarming. The fact that they haven't visibly gone on the attack yet, reassuring.
The bottom line is that they must be stopped. So today, tomorrow and Friday Babygirl is getting more steroids. A LOT more - for those who speak this language, she is getting prednisolone 300 mg. per dose. I can tell you from personal experience that 32 mg/day nearly made me insane, but so far she is merely giddy.
And speaking of giddy, the meds they gave her to overcome the tickling sensation of the biopsy procedure (yeah, really. Tickling?) had not worn off yet when she got up this morning. Those of you who have seen her trip over the carpet at church with a lit flame while accolyting will have to take my word for it: She surpassed all previously known levels of uncoordination. Picture the trajectory of Woodstock's flight, only on the ground.
Next news is on the neutrophils. She's still low, so they (after I nagged steadily for 36 hours) called a hematology consult. The went back to her original blood work, while on dialysis, and made a way cool graph of all her counts from then until now. I was able to pinpoint dates - transplant, last hospital stay, Neupogen injections.
They feel that this is related to the transplant/meds (well, okay, since she was never sick a minute before this) but admit it could be a random coincidentally timed separate disaster (okay, pick one, boys.). At this point they are going to watch what happens when they give the steroids. If it's transplant/med related, her counts will come up as a side effect of the steroids. If not, then they need to consider, at some point, whether her bone marrow will need to be looked at, which would give us another fun run with the sedation team, but that's a question for another (hopefully distant) day.
The best news is that they feel she can attend school if her count is over 500 (currently we've been out for counts under 1000). So barring some new disaster, she'll return to school on Monday.
So all in all it's not as bad as it might be. But these people owe a HUGE apology to Mr. and Mrs. O. If I had known we were going to be here for FIVE days instead of two they might have wanted to keep their car LOL. And frankly, if I'd have known we were going to be here for five days I'd have brought more clothing (and some WINE).
DeeDee
The bottom line is that they must be stopped. So today, tomorrow and Friday Babygirl is getting more steroids. A LOT more - for those who speak this language, she is getting prednisolone 300 mg. per dose. I can tell you from personal experience that 32 mg/day nearly made me insane, but so far she is merely giddy.
And speaking of giddy, the meds they gave her to overcome the tickling sensation of the biopsy procedure (yeah, really. Tickling?) had not worn off yet when she got up this morning. Those of you who have seen her trip over the carpet at church with a lit flame while accolyting will have to take my word for it: She surpassed all previously known levels of uncoordination. Picture the trajectory of Woodstock's flight, only on the ground.
Next news is on the neutrophils. She's still low, so they (after I nagged steadily for 36 hours) called a hematology consult. The went back to her original blood work, while on dialysis, and made a way cool graph of all her counts from then until now. I was able to pinpoint dates - transplant, last hospital stay, Neupogen injections.
They feel that this is related to the transplant/meds (well, okay, since she was never sick a minute before this) but admit it could be a random coincidentally timed separate disaster (okay, pick one, boys.). At this point they are going to watch what happens when they give the steroids. If it's transplant/med related, her counts will come up as a side effect of the steroids. If not, then they need to consider, at some point, whether her bone marrow will need to be looked at, which would give us another fun run with the sedation team, but that's a question for another (hopefully distant) day.
The best news is that they feel she can attend school if her count is over 500 (currently we've been out for counts under 1000). So barring some new disaster, she'll return to school on Monday.
So all in all it's not as bad as it might be. But these people owe a HUGE apology to Mr. and Mrs. O. If I had known we were going to be here for FIVE days instead of two they might have wanted to keep their car LOL. And frankly, if I'd have known we were going to be here for five days I'd have brought more clothing (and some WINE).
DeeDee
Tuesday, May 29, 2012
Week Fifty-eight - Biopsy......
"No food after 6 AM, and nothing to drink after noon."
Those were our instructions. That, and we new we needed to get blood work, because if the blood work was good, we were off the hook on the biopsy thing, right?
The usual traffic fight, followed by the usual vein search (it still only takes one stick, but the phlebotomist has got to be willing to LOOK). By 9:30, we had the bad news: Creatinine up to 1.2, the highest yet, and no improvement in the neutrophil count.
Since we had a few hours to kill we went to the Penn Museum, which is right around the corner from the hospital. We saw and exhibit on the "2012 Phenomenon" and Maya culture in general, which was awesome since Babygirl is Maya. We also looked at some excellent ancient Greek and Roman and Native American artifacts. We checked the time, realized it was nearly noon and fled to a street vendor for a final drink.
The biopsy procedure went without difficulty. Well, except for one thing. It turns out that Babygirl's extreme ticklishness (is that a word? Spell check thinks not!) made it nearly impossible for them to ultrasound, mark, and stick a needle in her belly. Apparently severely ticklish people require extra sedation.
She's flat on her back until 11 PM, and has learned how unpleasant bedpans are, although she agrees they are a few steps up from catheters. We won't get the biopsy report until after noon tomorrow, and then? I was under the perhaps mistaken impression that we'd be able to go home. But our admitting resident reluctantly gave me a somewhat bigger list of potential problems, and gently planted the idea that we may have to stay to start treatment for whatever they find.
Ugh. Ughughugh. My office is undoubtedly a madhouse already since one of the other doctors in the building died over the weekend, most unexpectedly. I'm truly needed there. And truly truly truly needed here. It's no contest - if she stays, I stay. But dang. I say, DANG.
DeeDee
Those were our instructions. That, and we new we needed to get blood work, because if the blood work was good, we were off the hook on the biopsy thing, right?
The usual traffic fight, followed by the usual vein search (it still only takes one stick, but the phlebotomist has got to be willing to LOOK). By 9:30, we had the bad news: Creatinine up to 1.2, the highest yet, and no improvement in the neutrophil count.
Since we had a few hours to kill we went to the Penn Museum, which is right around the corner from the hospital. We saw and exhibit on the "2012 Phenomenon" and Maya culture in general, which was awesome since Babygirl is Maya. We also looked at some excellent ancient Greek and Roman and Native American artifacts. We checked the time, realized it was nearly noon and fled to a street vendor for a final drink.
The biopsy procedure went without difficulty. Well, except for one thing. It turns out that Babygirl's extreme ticklishness (is that a word? Spell check thinks not!) made it nearly impossible for them to ultrasound, mark, and stick a needle in her belly. Apparently severely ticklish people require extra sedation.
She's flat on her back until 11 PM, and has learned how unpleasant bedpans are, although she agrees they are a few steps up from catheters. We won't get the biopsy report until after noon tomorrow, and then? I was under the perhaps mistaken impression that we'd be able to go home. But our admitting resident reluctantly gave me a somewhat bigger list of potential problems, and gently planted the idea that we may have to stay to start treatment for whatever they find.
Ugh. Ughughugh. My office is undoubtedly a madhouse already since one of the other doctors in the building died over the weekend, most unexpectedly. I'm truly needed there. And truly truly truly needed here. It's no contest - if she stays, I stay. But dang. I say, DANG.
DeeDee
Monday, May 28, 2012
Travel Day.....
While y'all are enjoying your Memorial Day picnics and remembrances, Babygirl and I will be on the road in a set of borrowed wheels (thanks to Mr. and Mrs. O, who because of Mr. O's transplant REALLY understand why we need this!). Sadly, it's not a convertible, although I admit that that would defeat the purpose. It's a lovely day to drive by the looks of things, and we located the missing Ipod charger so we'll have some good tunes on the way!
We'll have the evening with family all the same. I'm so grateful that we have a welcoming home at the other end of this journey! I'm bringing watermelon, but I'm thinking that maybe another batch of s'mores might be in order....
I'm not looking forward to what tomorrow holds. Procedures are never fun, and despite the wonderful folks at CHOP, admission doesn't seem like such a good time either. I'll do my best to keep everybody updated, although I'm betting that we won't have the kidney biopsy results until Wednesday.
Oh, and here's another I'm-medical-so-I-don't-know-what-normal-people-think moment: Just because they are performing a biopsy doesn't mean that anyone is at all concerned about the possibility of Babygirl having cancer. Biopsies are done for a variety of reasons, and in this case, it's to see what is causing the decline in kidney function. Tissue looks different depending on what's hurting it, so if it's medication damage it will look different than if there is rejection-related damage.
I guess if I get to pick I want it to be medication related. That way, I assume, they can change medications and make things better. Doncha just love that Pollyanna attitude?
DeeDee
We'll have the evening with family all the same. I'm so grateful that we have a welcoming home at the other end of this journey! I'm bringing watermelon, but I'm thinking that maybe another batch of s'mores might be in order....
I'm not looking forward to what tomorrow holds. Procedures are never fun, and despite the wonderful folks at CHOP, admission doesn't seem like such a good time either. I'll do my best to keep everybody updated, although I'm betting that we won't have the kidney biopsy results until Wednesday.
Oh, and here's another I'm-medical-so-I-don't-know-what-normal-people-think moment: Just because they are performing a biopsy doesn't mean that anyone is at all concerned about the possibility of Babygirl having cancer. Biopsies are done for a variety of reasons, and in this case, it's to see what is causing the decline in kidney function. Tissue looks different depending on what's hurting it, so if it's medication damage it will look different than if there is rejection-related damage.
I guess if I get to pick I want it to be medication related. That way, I assume, they can change medications and make things better. Doncha just love that Pollyanna attitude?
DeeDee
Sunday, May 27, 2012
Speechless.....
Everyone who reads this blog has a grip on what a challenge this has been financially. We started last year with no back bills, no credit card debt and a big savings account. We are now maxed out on one credit card, carry a balance for our tolls on another, and are living paycheck to paycheck. Each trip to Philadelphia costs about $100. The car needs an expensive repair to get the air conditioning running (not a luxury in our situation since Babygirl really can't take the heat). And two days ago we discovered we need a part for the pool filter (yeah, that's a luxury, but Babygirl can't swim in a public pool if her immune system isn't working well). As of yesterday I was wondering where the money would come from for the unexpected trip we have to make tomorrow, but hey, God's been taking care of it, so.....
I have had no less than four people offer to lend us reliable cars with working AC. I have had one person ask me to get an updated estimate on the repair so they can help pay for it. And if that's not enough, there was church this morning.
Apparently our church decided to make us a mission project. Each year we collect money for The Great Fifty Days (the Easter season, a "week of weeks and a day", seven weeks after Easter plus Pentecost Sunday), and the money is donated to some cause, usually some special need outside of our church. But this morning they called Hubby and me up to the front and presented us with a check. A LARGE check. A check big enough to repair the car, get the filter part, get us to Philly, and make a dent in that credit card.
We stood in front of our congregation and cried. We are not a huge church, number-wise. I know that people gave who probably could afford it about as well as we can. I know that this is the most loving, faithful, dedicated bunch of folks that ever, ever gave praise to God on a Sunday. They feed the hungry, clothe the needy, and go out into the world without hesitation to serve in whatever way they can.
And they love.
Babygirl couldn't go this morning because her immune system is too weak, so we told her about it when we got home. We kept it simple, but we went out and bought her a bright red beanbag chair for her room - something she's wanted for a long time that we've had on hold. Red's her favorite color, and coincidentally the color of Pentecost, representative of the Spirit that moved to give us this gift.
It's tough to make me speechless. Tough to make me cry in public. They did both today.
DeeDee
I have had no less than four people offer to lend us reliable cars with working AC. I have had one person ask me to get an updated estimate on the repair so they can help pay for it. And if that's not enough, there was church this morning.
Apparently our church decided to make us a mission project. Each year we collect money for The Great Fifty Days (the Easter season, a "week of weeks and a day", seven weeks after Easter plus Pentecost Sunday), and the money is donated to some cause, usually some special need outside of our church. But this morning they called Hubby and me up to the front and presented us with a check. A LARGE check. A check big enough to repair the car, get the filter part, get us to Philly, and make a dent in that credit card.
We stood in front of our congregation and cried. We are not a huge church, number-wise. I know that people gave who probably could afford it about as well as we can. I know that this is the most loving, faithful, dedicated bunch of folks that ever, ever gave praise to God on a Sunday. They feed the hungry, clothe the needy, and go out into the world without hesitation to serve in whatever way they can.
And they love.
Babygirl couldn't go this morning because her immune system is too weak, so we told her about it when we got home. We kept it simple, but we went out and bought her a bright red beanbag chair for her room - something she's wanted for a long time that we've had on hold. Red's her favorite color, and coincidentally the color of Pentecost, representative of the Spirit that moved to give us this gift.
It's tough to make me speechless. Tough to make me cry in public. They did both today.
DeeDee
Saturday, May 26, 2012
Some Nice Down Time......
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
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
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
Tuesday, May 15, 2012
Racing to the Finish Line......
My Mom called me at work yesterday to tell me she was having trouble breathing. She'd been a bit winded at my house the day before, at least in part because she left her oxygen in her car. So I asked the obvious, "Are you wearing your oxygen?" "Of course I am!" she indignantly replied, as if to imply otherwise was nonsense (umm... see above.). I told her to call her doctor. "Well, what's HE going to do??" What, indeed, I think. As in, what am I supposed to do??
She called. The nurse then called me and informed me that my Mom sounded so short of breath on the phone that she recommended she go to the ER. She called my Mom, told her to go, and oddly, she went without argument.
Heaven bless my sister-in-law, who transported her and kept her company during the six hour wait and assessment. Her observations regarding ER waiting rooms were hysterical - among them noting that after a while, everybody on Judge Judy looks the same. I was able to arrive shortly after they decided Mom needed to be admitted again for congestive heart failure, and sis-in-law made it to work on time. I entertained Mom with a half-dozen games of Skip-Bo. It's a sure sign that you spend too much time in hospitals if you have a card game or two in your purse just in case.
While they were wheeling my mom up to her room, I got a call from my Dad's number, but couldn't take it until I got Mom settled. When I picked up the voice mail I was appalled, though not surprised to hear my stepmother telling me that my Dad had just been admitted to their local hospital, four hours away, for recurrent pneumonia.
Neither admission was a true crisis. But the ongoing decline in health of both of my parents is, clearly, a sad thing for me. Mom is on a 5 minute memory reset - I must have told her 4 times at least why she couldn't eat in the ER (waiting to have a test) and each time had to tell her what the test was for. She tried to call the nurse each time, and it was clear that they had also had the same conversation with her at least a couple of times before I got there. Dad has sounded increasingly winded each time I've spoken to him lately. I'm grateful that his wife is still strong enough to take care of him, since I'm too far away to be any help at all.
My parents are young. Mom is 74, Dad 76. I know I'm lucky, at 54, to have them at all. But lately it feels like they are racing each other to the finish line. I'm not sure at all what the winner gets, but I'm thinking it's lose/lose for me.
DeeDee
She called. The nurse then called me and informed me that my Mom sounded so short of breath on the phone that she recommended she go to the ER. She called my Mom, told her to go, and oddly, she went without argument.
Heaven bless my sister-in-law, who transported her and kept her company during the six hour wait and assessment. Her observations regarding ER waiting rooms were hysterical - among them noting that after a while, everybody on Judge Judy looks the same. I was able to arrive shortly after they decided Mom needed to be admitted again for congestive heart failure, and sis-in-law made it to work on time. I entertained Mom with a half-dozen games of Skip-Bo. It's a sure sign that you spend too much time in hospitals if you have a card game or two in your purse just in case.
While they were wheeling my mom up to her room, I got a call from my Dad's number, but couldn't take it until I got Mom settled. When I picked up the voice mail I was appalled, though not surprised to hear my stepmother telling me that my Dad had just been admitted to their local hospital, four hours away, for recurrent pneumonia.
Neither admission was a true crisis. But the ongoing decline in health of both of my parents is, clearly, a sad thing for me. Mom is on a 5 minute memory reset - I must have told her 4 times at least why she couldn't eat in the ER (waiting to have a test) and each time had to tell her what the test was for. She tried to call the nurse each time, and it was clear that they had also had the same conversation with her at least a couple of times before I got there. Dad has sounded increasingly winded each time I've spoken to him lately. I'm grateful that his wife is still strong enough to take care of him, since I'm too far away to be any help at all.
My parents are young. Mom is 74, Dad 76. I know I'm lucky, at 54, to have them at all. But lately it feels like they are racing each other to the finish line. I'm not sure at all what the winner gets, but I'm thinking it's lose/lose for me.
DeeDee
Monday, May 14, 2012
Happy Mother's Day.....
It WAS a happy day. My mom was there, although it took several reminders to make sure she made it. Curlygirl, BoosMommy and Babygirl were all there. Hubby made a roast chicken and a roast ham, with brownies with ice cream for dessert. The girls did the dishes. Boo got to practice her toddling. Squeaker was delightfully charming. Citygirl sent flowers, as did Babygirl and her dad!
The only work I did prior to the Mother's Day celebration was to load the food into the oven, since Hubby works on Sunday mornings.
And then, by 3 PM, it was over. Curlygirl and Hubby left for today's appointment in Philadelphia. The other girls and the babies went home. Mom and I had some coffee together, and she left.
So I did some work. I brought all the remaining dialysis crap downstairs for pickup later this week. I'd managed to forget just how heavy 22 pound boxes are! I was sweating when I finished. I took Simon for a walk, to the river park and the river walk, making sure to keep him away from the water - his spaniel side REALLY pushes him to chase ducks! I ate too many leftover brownies. I sat in my outdoor haven and read a little before the twilight faded completely. It was a good day.
I'm learning, mostly, to let the regret that it wasn't a completely "normal" day wash past me. I felt it more at Easter, when the pressure of what is usually a happy, quiet holiday hit me harder. Learning to fit family time into a significantly truncated day has been challenging, and I found it impossible to simply relax and let the day flow as best it could. I did better yesterday. I'll do better next time.
Besides, the next holiday is Memorial Day. Camping IS relaxing! Okay, it's a germ extravaganza, and the first attempt since Babygirl's diagnosis, but at least we aren't hauling the dialysis machine along. Hand sanitizer....hand sanitizer....hand sanitizer....
Hmmm....
I'm clearly still having stress management issues LOL.
DeeDee
The only work I did prior to the Mother's Day celebration was to load the food into the oven, since Hubby works on Sunday mornings.
And then, by 3 PM, it was over. Curlygirl and Hubby left for today's appointment in Philadelphia. The other girls and the babies went home. Mom and I had some coffee together, and she left.
So I did some work. I brought all the remaining dialysis crap downstairs for pickup later this week. I'd managed to forget just how heavy 22 pound boxes are! I was sweating when I finished. I took Simon for a walk, to the river park and the river walk, making sure to keep him away from the water - his spaniel side REALLY pushes him to chase ducks! I ate too many leftover brownies. I sat in my outdoor haven and read a little before the twilight faded completely. It was a good day.
I'm learning, mostly, to let the regret that it wasn't a completely "normal" day wash past me. I felt it more at Easter, when the pressure of what is usually a happy, quiet holiday hit me harder. Learning to fit family time into a significantly truncated day has been challenging, and I found it impossible to simply relax and let the day flow as best it could. I did better yesterday. I'll do better next time.
Besides, the next holiday is Memorial Day. Camping IS relaxing! Okay, it's a germ extravaganza, and the first attempt since Babygirl's diagnosis, but at least we aren't hauling the dialysis machine along. Hand sanitizer....hand sanitizer....hand sanitizer....
Hmmm....
I'm clearly still having stress management issues LOL.
DeeDee
Thursday, May 10, 2012
Week Fifty-five - "The Reveal" Is Coming.......
I found this in my inbox today, from Make-A-Wish:
We are getting excited and hope you are all doing well!!"
Well, DANG, I AM excited! We still don't know which of her wishes will be granted - so I'm a little nervous!
And remember - it's a SECRET! Don't tell Babygirl!
DeeDee
"Hi there! Can you keep a secret? We are ready to grant Ana's wish!! But we don't want you to tell her that yet. I need a few things from you first:
1.) We would like to reveal her wish on 6/1/12 - it's a Friday - would this work for you?
2.) Who would you like to invite to the reveal party?
3.) Does Babygirl have any food restrictions at this time?
4.) Anything else you can think of that we would need to consider when planning?
We are getting excited and hope you are all doing well!!"
Well, DANG, I AM excited! We still don't know which of her wishes will be granted - so I'm a little nervous!
And remember - it's a SECRET! Don't tell Babygirl!
DeeDee
Tuesday, May 8, 2012
Writing Letters......
I'm behind in my letter writing. No big surprise, really - we've been a bit busy and dreadfully self-involved. I'm behind on thank you notes (and I was doing a pretty good job of keeping up with those). I need to write a letter to Dinah, our Compassion child.
But the letter I really need to write is to Jorge's family. I don't know where or how to begin. After all, this letter is not about me, it's about them and the incredible gift they gave us. Do I tell them about Babygirl? If so, how much? What would I want to hear if I were them?
It's a conflicting internal conversation. Part of me would want to hear no more than "Thank you" and "Our child is doing well." Would I really want to hear about someone else being able to do all the things that my child, having died, will never be able to do? Or would it make me feel better to know that someone else's child can sleep better, eat better, swim, ride horses, ski, travel, plan for college....
They sent us a picture. I'd like to reciprocate that gesture. I'm not sure I should. If I do, just her? A family shot?
And I need to involve Babygirl in the process. I'm sure a note from her would mean far more than anything I could possibly say, but how do I approach this with her?
I'm not usually particularly indecisive. And when I am, I usually end up figuring out what exactly has had me holding off on doing something. I'm having a hard time picking my own brain on this, but at least part of it has to do with a deep and basic personality flaw: I have trouble asking for and receiving help from others. I don't like to feel obligated, indebted. I like to stand on my own two feet, thank you very much, and I'm not fond of "crutches" of any kind. I don't like contemplating how badly I've been crippled this year - emotionally, physically, financially and even spiritually. Crutches, hell! I've needed mental wheelchairs, financial ambulances and spiritual hospitalization!
I can't repay any of it. I think it's time to order a death certificate for my pride and get over myself.
DeeDee
But the letter I really need to write is to Jorge's family. I don't know where or how to begin. After all, this letter is not about me, it's about them and the incredible gift they gave us. Do I tell them about Babygirl? If so, how much? What would I want to hear if I were them?
It's a conflicting internal conversation. Part of me would want to hear no more than "Thank you" and "Our child is doing well." Would I really want to hear about someone else being able to do all the things that my child, having died, will never be able to do? Or would it make me feel better to know that someone else's child can sleep better, eat better, swim, ride horses, ski, travel, plan for college....
They sent us a picture. I'd like to reciprocate that gesture. I'm not sure I should. If I do, just her? A family shot?
And I need to involve Babygirl in the process. I'm sure a note from her would mean far more than anything I could possibly say, but how do I approach this with her?
I'm not usually particularly indecisive. And when I am, I usually end up figuring out what exactly has had me holding off on doing something. I'm having a hard time picking my own brain on this, but at least part of it has to do with a deep and basic personality flaw: I have trouble asking for and receiving help from others. I don't like to feel obligated, indebted. I like to stand on my own two feet, thank you very much, and I'm not fond of "crutches" of any kind. I don't like contemplating how badly I've been crippled this year - emotionally, physically, financially and even spiritually. Crutches, hell! I've needed mental wheelchairs, financial ambulances and spiritual hospitalization!
I can't repay any of it. I think it's time to order a death certificate for my pride and get over myself.
DeeDee
Saturday, May 5, 2012
Week Fifty-four - Extravagant Generosity......
Our church is reading a devotional guide called Practicing Extravagant Generosity by Robert Schnase. I'm supposed to be doing one reading a day, but I took it with me to Philly and had time to read the entire thing. In a reading called "First Things First" the author discusses how everyone seems to think that if they just had 20% more income, they'd be happy. Nearly everybody, rich and poor alike, seem to be reaching for "just a little" more. Mr. Schnase declares, "This is a prescription for never-ending unhappiness."
I became ill at the end of 2010. Prior to that I had a salaried position with productivity bonuses, and I worked at least one extra day in a non-contract (ie overtime) position in each pay period. In 2011, I was paid for 80 hours per pay period, my base salary, representing an overall loss of about 10% of my income. Near the end of 2011 I re-negotiated my contract to reflect my ongoing level of disability, and now I receive 80% of my base pay, nearly 30% less than my 2010 income.
My hubby and I have always been givers. We have a monthly pledge to our church, we serve spend a week each year working with the Appalachia Service Project (http://asphome.org/), we sponsor a child through Compassion International (http://www.compassion.net/), we help serve food to the needy, and we toss a few bucks in special collections when asked. Despite our declining income, we have not decreased our giving substantially (except perhaps that we have less in our pockets at any given moment that we used to LOL). I could be proud of this, except....
We could have done better. We could have given more. We were both raised in households that were lower middle class, and our parents made commitments to give 10%. Somehow, 10% of a bigger income seemed like a LOT of money, or maybe it was the "it's mine so why should I share it" mentality that creeps into our American culture - the underlying discontent that makes us compare ourselves to "The Lifestyles of the Rich and Famous" and feel that we come up lacking somehow.
But Schnase suggests that "(b)y provoking us to give, God is not trying to take something away from us; God is seeking to give something to us." Redefining our priorities allows us to become free of material concerns.
We've seen this, this year. We've had to redefine for ourselves what matters. Nothing that we've had to give up in the budget matters. Nothing. And we've been the recipients of so many heart-felt gifts from others (not the least of which was Babygirl's new kidney!) that I could truly cry for joy for it all.
And the most interesting thing about this, to me, is that because of the drop in income, we are now approaching giving 10% of our take-home pay. And we are making a commitment to increase to that point, with an aim, over the next few years, to hit 10% of the total.
Over lunch today, Hubby suddenly asked me, "What would have happened to Babygirl if she weren't with us?" The answer is simple: "She'd be dead." The same is likely true for Curlygirl. It's the truth for hundreds of thousands and more kids all over the world. Starvation, disease, lack of clean water - these things kill as many as half of the children under 5 in developing countries.
Our next step toward closing the gap in giving will be to sponsor another child. Our current Compassion kid, Dinah, has been part of our family for nearly 5 years. It's time to adopt another.
Hubby and I have learned the hard way that you can't save them all. But we can save one more. And if even half of the people who read this save one too? That would be Extravagant Generosity indeed. Visit http://www.compassion.net/ and see if someone there is calling for your help.
DeeDee
I became ill at the end of 2010. Prior to that I had a salaried position with productivity bonuses, and I worked at least one extra day in a non-contract (ie overtime) position in each pay period. In 2011, I was paid for 80 hours per pay period, my base salary, representing an overall loss of about 10% of my income. Near the end of 2011 I re-negotiated my contract to reflect my ongoing level of disability, and now I receive 80% of my base pay, nearly 30% less than my 2010 income.
My hubby and I have always been givers. We have a monthly pledge to our church, we serve spend a week each year working with the Appalachia Service Project (http://asphome.org/), we sponsor a child through Compassion International (http://www.compassion.net/), we help serve food to the needy, and we toss a few bucks in special collections when asked. Despite our declining income, we have not decreased our giving substantially (except perhaps that we have less in our pockets at any given moment that we used to LOL). I could be proud of this, except....
We could have done better. We could have given more. We were both raised in households that were lower middle class, and our parents made commitments to give 10%. Somehow, 10% of a bigger income seemed like a LOT of money, or maybe it was the "it's mine so why should I share it" mentality that creeps into our American culture - the underlying discontent that makes us compare ourselves to "The Lifestyles of the Rich and Famous" and feel that we come up lacking somehow.
But Schnase suggests that "(b)y provoking us to give, God is not trying to take something away from us; God is seeking to give something to us." Redefining our priorities allows us to become free of material concerns.
We've seen this, this year. We've had to redefine for ourselves what matters. Nothing that we've had to give up in the budget matters. Nothing. And we've been the recipients of so many heart-felt gifts from others (not the least of which was Babygirl's new kidney!) that I could truly cry for joy for it all.
And the most interesting thing about this, to me, is that because of the drop in income, we are now approaching giving 10% of our take-home pay. And we are making a commitment to increase to that point, with an aim, over the next few years, to hit 10% of the total.
Over lunch today, Hubby suddenly asked me, "What would have happened to Babygirl if she weren't with us?" The answer is simple: "She'd be dead." The same is likely true for Curlygirl. It's the truth for hundreds of thousands and more kids all over the world. Starvation, disease, lack of clean water - these things kill as many as half of the children under 5 in developing countries.
Our next step toward closing the gap in giving will be to sponsor another child. Our current Compassion kid, Dinah, has been part of our family for nearly 5 years. It's time to adopt another.
Hubby and I have learned the hard way that you can't save them all. But we can save one more. And if even half of the people who read this save one too? That would be Extravagant Generosity indeed. Visit http://www.compassion.net/ and see if someone there is calling for your help.
DeeDee
Friday, May 4, 2012
Home Again, Home Again....
(This post was originally written the day after we returned from the hospital. It got delayed because the other posts seemed more important. I couldn't figure out an easy way to make it current, and I like it, so here it is.)
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
Thursday, May 3, 2012
This Trip Brought to You By.......
Remember the money post? The one right before the emergency run to Philly? The one that said we had $33 and enough for one trip?
That trip was supposed to be a one day thing, one meal, one snack, one tank of gas. It ended up being TWO trips: One for three days with the accompanying meals for two people and two tanks of gas to cover trips to and from my sister-in-law's, and a second trip for follow up (with one meal/snack/tank). It came to more money than we had available.
But... I'm not kidding about God being good, all the time. Right after I posted our money status, I got home to find a check that I had written to one of the hospitals had been returned, uncashed, because our insurance had picked up the bill.
Medicare is WORKING. So we had exactly what we needed. I'm home from the recheck visit (her numbers are stable, she's going to school tomorrow thankyouverymuch), and we have $39 leftover. We don't need to make another trip until after payday.
I have $6 worth of fish pieces and crumbs. LOLOL.
DeeDee
That trip was supposed to be a one day thing, one meal, one snack, one tank of gas. It ended up being TWO trips: One for three days with the accompanying meals for two people and two tanks of gas to cover trips to and from my sister-in-law's, and a second trip for follow up (with one meal/snack/tank). It came to more money than we had available.
But... I'm not kidding about God being good, all the time. Right after I posted our money status, I got home to find a check that I had written to one of the hospitals had been returned, uncashed, because our insurance had picked up the bill.
Medicare is WORKING. So we had exactly what we needed. I'm home from the recheck visit (her numbers are stable, she's going to school tomorrow thankyouverymuch), and we have $39 leftover. We don't need to make another trip until after payday.
I have $6 worth of fish pieces and crumbs. LOLOL.
DeeDee
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