Generally speaking, I don't believe in germs. I mean, really? Okay, so I get a cold here and there, and the odd UTI. But on a day-to-day basis I really can't afford to believe in germs. After all, I'm a doctor, and if I believed in them I'd be exposed to about a bajillion of the little suckers EVERY DAY! And that would mean I'd be sick all the time!!
This philosophy is, sadly, reflected in my housekeeping. I really don't see dust (I know, usually a male trait, but hey). Moving the couch to hunt for dust bunnies? Why not just let 'em mature and scoot out on their own? And I truly believe in the "Ten Second Rule." My kids routinely chanted, "God made dirt and dirt don't hurt!" when we were out camping.
But now I am being forced to believe. Those dialysis Grinches keep hounding us on the subject, making me actually LOOK for germs every single evening when I hook Babygirl up to her machine. "Is the fluid clear???" And they make me check again in the morning. "What's her temperature?" Okay, so they aren't actually here, but we have to write this stuff down on a flow chart every day. And a part of me thinks, "If we look hard enough, we're gonna find those germs!"
So now, all of a sudden, at the age of fifty-three I have to become a good housekeeper. No, a great housekeeper. A germophobic housekeeper! To quote Babygirl, "O M G." I have to develop a system.
I should have been well trained for this. My Mom was the Queen of System. I have no idea how she did what she did - she raised us, worked (part time when we were little and full time later, and that was third shift), and kept a very tidy house. She really did have a schedule of some sort fixed in her head, and it included things that still mystify me. I mean really, wash the windows? Six times a YEAR?
I am trying to visualize all of that. Trying to figure out why I didn't inherit The System. I mean, I know my Mom was a much younger mom than I am, but come on! How hard can it be?
Sigh. Hard. Really hard. I am at the office nine hours Monday, Tuesday, Thursday and Friday. Wednesdays I have been spending managing doctor's appointments for me, Babygirl, and my Mom. I also dedicate time to managing our finances, and negotiating with insurance companies, and grocery shopping. I do two loads of laundry daily (and we have a double loader, so make it four). Hubby and I both prep and cook depending on the day.
Saturday has become cleaning day. I used to do things like go skiing, read books, catch up on Facebook...... Now? I am working on a system. Each and every room was truly in desperate need of a deep cleaning, the kind where you empty the closet and scrub the shelves. This has been done. Now it's upkeep. And I keep noticing things I didn't see before, fingerprints on door frames, the thick trail of grime on the stairway wall. I think I was happier when I didn't SEE this stuff. So each time I clean, it actually takes a little LONGER, because I am being more thorough.
I am experimenting with cleaning products, figuring out which things are easiest to use, most cost effective, and best at killing our invisible enemy. And I am seeing, truly seeing, why this is so important. I expected her to have some trouble AFTER the transplant. After all, then they will be deliberately suppressing her immune system, and the germs will definitely have the home court advantage. What I never expected was how susceptible she'd be NOW, just because her kidneys aren't working.
Babygirl had four years of perfect attendance in elementary school. Rarely had a sniffle, caught the occasional strep throat and recovered in a day. But here in her first year of middle school she has missed six days of school due to illness. And she has a cold again now, her third so far this year. No one else in the house has been sick at all.
This enemy is ugly. Relentless. Deadly.
I guess I'm a believer now.
DeeDee
Showing posts with label peritoneal dialysis. Show all posts
Showing posts with label peritoneal dialysis. Show all posts
Saturday, January 21, 2012
Friday, January 20, 2012
Week Thirty-nine - Nothing Notable......
Three-quarters of a year have gone by since we first discovered that Babygirl was ill. In the amount of time it would have taken to make and have a baby, we have gone from the parents of a 'normal child', to desperately crazed parents of a 'special needs' child, and back to something once more resembling 'normal' parenting.
As far as Babygirl is concerned, she is not really any different. She has things she's not allowed to do, and stuff she wishes she could eat, but overall she seems to have thoroughly adjusted to her new life. Hubby and I are more relaxed, less likely to threaten to shoot the dialysis machine, and actually better at our relationship than we were before she was diagnosed. We communicate better (usually!), and take better care of each other.
We've survived surgery (one each for hubby, Babygirl and I), a major illness (me), a massive flood, the birth of our granddaughter. We're in the midst of major remodeling. We've changed the household composition from six, to four, to eight. We will likely soon be down to just the three of us, the smallest family we've had since 2001, before hubby and I even married! And, oddly, I am at peace with all of this. This week, at least.
I have to say that it is wonderful to report that there is nothing to report. There really only is so much drama that one can stand.
So this weekend we leave to visit the tertiary center for a general update. I get to visit my brother and sister-in-law, and as a bonus, my NYC daughter will be visiting them as well. Life is good.
DeeDee
As far as Babygirl is concerned, she is not really any different. She has things she's not allowed to do, and stuff she wishes she could eat, but overall she seems to have thoroughly adjusted to her new life. Hubby and I are more relaxed, less likely to threaten to shoot the dialysis machine, and actually better at our relationship than we were before she was diagnosed. We communicate better (usually!), and take better care of each other.
We've survived surgery (one each for hubby, Babygirl and I), a major illness (me), a massive flood, the birth of our granddaughter. We're in the midst of major remodeling. We've changed the household composition from six, to four, to eight. We will likely soon be down to just the three of us, the smallest family we've had since 2001, before hubby and I even married! And, oddly, I am at peace with all of this. This week, at least.
I have to say that it is wonderful to report that there is nothing to report. There really only is so much drama that one can stand.
So this weekend we leave to visit the tertiary center for a general update. I get to visit my brother and sister-in-law, and as a bonus, my NYC daughter will be visiting them as well. Life is good.
DeeDee
Friday, January 6, 2012
Week Thirty-Seven - Keep the Damned Phone ON!!.......
Somehow I walked out the door today without my cell phone. I didn't miss it until after lunch, and I'm not sure why I noticed then. It actually usually lives in my bra, and I'm so used to it being there that it's mentally "invisible," like a wedding ring or your glasses.
Even when I noticed I didn't worry about it much. The transplant team has a list of numbers, and both times when they have called I didn't have my phone on me (once I had just gotten out of the shower and once it was on the charger upstairs), and both times they called Hubby's phone. They also have our home number, my work number, and family numbers as well.
But when I looked at our answering machine today when I came home there was a call from BOTH transplant teams! I nearly stopped breathing. The one from the local team turned out to be a question about Babygirl's current insurance. Phew. But the one from the tertiary center was, "Please call us back within an hour." Ouch. Too late to meet that deadline. Hubby was ready to cry, and I was not too happy myself. No one had called HIS cell - and he had it on him all day. So I went hunting for mine, and found that I had SIX voice mails.
Turns out three of them were irrelevant - Mom wanting to go shopping, somebody asking about tomorrow's baby shower, a call from our local doc. But three were from the tertiary transplant team. The first two were as cryptic as the one on the answering machine. But the third finally revealed the point of the phone calls.
It was NOT a kidney. Babygirl had blood drawn at the dialyis center Wednesday, and I forgot to take a shipping label with me, so we brought the blood home, added the label and hiked it to our hospital for pick up. Apparently the discrepancy between draw site and pick up site caught the lab's attention, and they wanted verification of the dialysis center's information. Well, we missed that call, so I'm guessing they tossed the blood and we will need to go get a new one done next week. Inconvenient, uncomfortable for Babygirl, but not as bad as missing a "We have a kidney for you" call.
I am sure that the transplant coordinator will have something to say to me on Monday. And whatever it is, I agree. I CANNOT believe I walked out the door without that phone.
DeeDee
Even when I noticed I didn't worry about it much. The transplant team has a list of numbers, and both times when they have called I didn't have my phone on me (once I had just gotten out of the shower and once it was on the charger upstairs), and both times they called Hubby's phone. They also have our home number, my work number, and family numbers as well.
But when I looked at our answering machine today when I came home there was a call from BOTH transplant teams! I nearly stopped breathing. The one from the local team turned out to be a question about Babygirl's current insurance. Phew. But the one from the tertiary center was, "Please call us back within an hour." Ouch. Too late to meet that deadline. Hubby was ready to cry, and I was not too happy myself. No one had called HIS cell - and he had it on him all day. So I went hunting for mine, and found that I had SIX voice mails.
Turns out three of them were irrelevant - Mom wanting to go shopping, somebody asking about tomorrow's baby shower, a call from our local doc. But three were from the tertiary transplant team. The first two were as cryptic as the one on the answering machine. But the third finally revealed the point of the phone calls.
It was NOT a kidney. Babygirl had blood drawn at the dialyis center Wednesday, and I forgot to take a shipping label with me, so we brought the blood home, added the label and hiked it to our hospital for pick up. Apparently the discrepancy between draw site and pick up site caught the lab's attention, and they wanted verification of the dialysis center's information. Well, we missed that call, so I'm guessing they tossed the blood and we will need to go get a new one done next week. Inconvenient, uncomfortable for Babygirl, but not as bad as missing a "We have a kidney for you" call.
I am sure that the transplant coordinator will have something to say to me on Monday. And whatever it is, I agree. I CANNOT believe I walked out the door without that phone.
DeeDee
Tuesday, December 13, 2011
Week Thirty-four - Sing We All of Christmas......
Sing we all Noel!
That's the song in my head tonight. I sang Babygirl to bed with "O Come All Ye Faithful" a couple of hours ago while the machine hit an alarm I've never seen before ("check to see if heater bag is on the heater and check if heater bag clamp is closed"). Odd one to get when the machine has ALREADY been pulling fluid from that bag for five minutes, but hey, I checked, the machine believed me and it's been quiet since.
So how are we all doing in our Christmas preparations? We have our very obese Christmas tree up. Usually our Nativity set goes up before we have the tree decorated, and setting that up is a family event. This year I wasn't able to manage it, and my middle daughter set it up on her own (nice job, sweetie!) and got all the empty decoration storage bins out of the dining room where they had been sitting unattended for a week. There are no outside decorations up. And our mantle could use a string of lights. I needed that one to replace a tree set and haven't had the time to get another.
And as for Christmas shopping? Well, I missed Black Friday. And I haven't really done anything else. What I do have, I have wrapped. But I'm starting to feel a bit pressured - a lot to do, not much money to do it with, and less time.
The bills are starting to pile up. We haven't heard from Social Security on our Medicare appeal. I need to get on the phone and talk to them, but tomorrow is already so booked I hardly know what to do first. And no matter what else I choose to do, I have to be home in time to put the dialysis machine together. I keep asking people to be patient, but you know in your gut that sooner or later you'll owe someone so much that they'll just say, "Hey, we can't treat your kid unless you pay." And the dialysis bill is the big one - we're up to nearly $5000 and it's being contested by our insurance company.
I despise the idea of using a credit card for either Christmas spending OR for medical bills. And my paycheck is already showing the 20% cut I had to agree to this year to balance out what I know I am not going to make because of my illness.
"Peace on earth, and good will toward men."
Peace sounds good. Trust, better. Faith, great. Hope? Wishful thinking some days.
DeeDee
That's the song in my head tonight. I sang Babygirl to bed with "O Come All Ye Faithful" a couple of hours ago while the machine hit an alarm I've never seen before ("check to see if heater bag is on the heater and check if heater bag clamp is closed"). Odd one to get when the machine has ALREADY been pulling fluid from that bag for five minutes, but hey, I checked, the machine believed me and it's been quiet since.
So how are we all doing in our Christmas preparations? We have our very obese Christmas tree up. Usually our Nativity set goes up before we have the tree decorated, and setting that up is a family event. This year I wasn't able to manage it, and my middle daughter set it up on her own (nice job, sweetie!) and got all the empty decoration storage bins out of the dining room where they had been sitting unattended for a week. There are no outside decorations up. And our mantle could use a string of lights. I needed that one to replace a tree set and haven't had the time to get another.
And as for Christmas shopping? Well, I missed Black Friday. And I haven't really done anything else. What I do have, I have wrapped. But I'm starting to feel a bit pressured - a lot to do, not much money to do it with, and less time.
The bills are starting to pile up. We haven't heard from Social Security on our Medicare appeal. I need to get on the phone and talk to them, but tomorrow is already so booked I hardly know what to do first. And no matter what else I choose to do, I have to be home in time to put the dialysis machine together. I keep asking people to be patient, but you know in your gut that sooner or later you'll owe someone so much that they'll just say, "Hey, we can't treat your kid unless you pay." And the dialysis bill is the big one - we're up to nearly $5000 and it's being contested by our insurance company.
I despise the idea of using a credit card for either Christmas spending OR for medical bills. And my paycheck is already showing the 20% cut I had to agree to this year to balance out what I know I am not going to make because of my illness.
"Peace on earth, and good will toward men."
Peace sounds good. Trust, better. Faith, great. Hope? Wishful thinking some days.
DeeDee
Wednesday, November 30, 2011
Week Thirty-two - Planning More Travel......
Usually at this time of year we make a trip to my Dad's, about four hours away. This would put us five hours from our secondary center, and nearly eight from our tertiary one. I hate to break with tradition, but I have to admit to a certain degree of discomfort with that second distance.
We did learn, when we last received a phone call about a potential kidney, that there was a four-hour wait for the matching alone. In that time, we could be home and packing. But then we would face an additional three to four hours to get to a hospital. And quite honestly, I'd really hate to face her surgery already totally exhausted!
Of course, we really only have two choices. We can continue to live our lives as normally as possible (which we have been trying to do), or we can refuse to leave the house to go in any direction that takes us AWAY from the transplant center. All of the other travel I have done with Babygirl has been more or less toward the transplant center, or at least no further away than where we are now. So now I have to consider a new aspect of this problem. There are also weather issues to consider. My dad's house gets tons of snow, usually starting in October. We have, so far, never been snowed in there on a December visit. January is much riskier in that regard, and we are likely to go back then as well. And of course, we need to pack enough suppies to do CAPD for two days, maybe with a couple days extra in case of snow.
Sigh.
There is always one more thing to think about, one more thing about our lives that just isn't as simple or carefree as it used to be.
DeeDee
We did learn, when we last received a phone call about a potential kidney, that there was a four-hour wait for the matching alone. In that time, we could be home and packing. But then we would face an additional three to four hours to get to a hospital. And quite honestly, I'd really hate to face her surgery already totally exhausted!
Of course, we really only have two choices. We can continue to live our lives as normally as possible (which we have been trying to do), or we can refuse to leave the house to go in any direction that takes us AWAY from the transplant center. All of the other travel I have done with Babygirl has been more or less toward the transplant center, or at least no further away than where we are now. So now I have to consider a new aspect of this problem. There are also weather issues to consider. My dad's house gets tons of snow, usually starting in October. We have, so far, never been snowed in there on a December visit. January is much riskier in that regard, and we are likely to go back then as well. And of course, we need to pack enough suppies to do CAPD for two days, maybe with a couple days extra in case of snow.
Sigh.
There is always one more thing to think about, one more thing about our lives that just isn't as simple or carefree as it used to be.
DeeDee
Saturday, November 26, 2011
Moving On To The Next Holiday.......Stress Management Part 218
I love Christmas. I have to admit I go spectacularly overboard every year. It's not, for me, about doing the Martha Stewart, although my home looks very seasonal (or will at the end of next weekend). We have ornaments from my Grandma on down. We have handmade kid decorations. We have lights, and candles. I even go around my office hallways wrapping all the pictures and diplomas to look like enormous presents hanging on the walls (an idea I confess I stole from a Perkins Pancake House thirty or more years ago). But I admit to going seriously insane about presents.
So the idea of doing all of this on a much more restricted budget than I am accustomed to is, well, challenging. I am a bit ashamed to even put this into words when so many of my neighbors and friends have been made homeless (or at least decoration-less) by recent storms and flooding. It's like the people who are going to have to let the maid go because of a salary drop - it's hard to work up any sympathy for anybody but the maid.
But I have already warned the kids that we aren't getting as much as usual. And I am looking at ways to tightly stick to the budget I've set. My husband and I already attended the local publisher's booksale and got a lot of excellent gifts there for very little. All of the kids except Babygirl are adults now anyway. And everybody is always happy when their stocking is full of food.
But the season isn't about all of that, and I easily forget. I get giving mixed up with loving. I get receiving confused with being loved. And I forget what it's all for.
It's for making a warm place where people feel welcome. It's for remembering family. It's for enjoying a homemade eggnog with people who get funnier the more eggnog you drink. It's about being with people who aren't bored when you tell the story of the traditional Christmas Tree Hunt of your childhood. Again.
And it's about remembering the One whose birth gave us good tidings of great joy.
So this season my "mindfullness" will be aimed at this: in my spare quiet moments, I will remember that Baby. And I will remember.
DeeDee
So the idea of doing all of this on a much more restricted budget than I am accustomed to is, well, challenging. I am a bit ashamed to even put this into words when so many of my neighbors and friends have been made homeless (or at least decoration-less) by recent storms and flooding. It's like the people who are going to have to let the maid go because of a salary drop - it's hard to work up any sympathy for anybody but the maid.
But I have already warned the kids that we aren't getting as much as usual. And I am looking at ways to tightly stick to the budget I've set. My husband and I already attended the local publisher's booksale and got a lot of excellent gifts there for very little. All of the kids except Babygirl are adults now anyway. And everybody is always happy when their stocking is full of food.
But the season isn't about all of that, and I easily forget. I get giving mixed up with loving. I get receiving confused with being loved. And I forget what it's all for.
It's for making a warm place where people feel welcome. It's for remembering family. It's for enjoying a homemade eggnog with people who get funnier the more eggnog you drink. It's about being with people who aren't bored when you tell the story of the traditional Christmas Tree Hunt of your childhood. Again.
And it's about remembering the One whose birth gave us good tidings of great joy.
So this season my "mindfullness" will be aimed at this: in my spare quiet moments, I will remember that Baby. And I will remember.
DeeDee
Monday, October 24, 2011
Week Twenty-seven......Time For Silliness
My baby has some interesting tastes for a child. She is a "show junkie." If it's playing at the old Art Deco theater, she is happy to go and see it. It doesn't matter what it is, really - kids' musicals, Haendel's Messiah, Broadway shows, even (or perhaps especially) opera.
Now, I love music. And my tastes range widely, from Eminem to Josh Groban (who, by the way, is Babygirl's favorite after Selena). But opera has never really been my gig. But that was, honestly, before I ever got to SEE an opera. So although I'm still not a fan of listening to it, I do like to watch it, especially with my little one.
But I have learned something important about opera. It isn't just music, and pretty costumes. It's libretto. And the words to opera add up to some pretty incredibly heavy themes. I made the mistake of taking my baby, then aged nine, to see Faust. The libretto is flashed for the ignorant unilingual among us on a screen above the stage. I am reading this to Babygirl as we go along. But really, how does one explain a deal with the Devil that returns you to your youth so you can seduce an innocent maiden, get her pregnant, abandon her so she loses her mind and kills the baby? And then she choses the death penalty rather than make a deal with Faust and the Devil to extend her freedom?
So I've learned to check ahead.
Three weeks ago my mom called. She wanted to go and see Madame Butterfly and take Babygirl with her. Hmmmm.... "Mom, it's a pretty dark story. Butterfly cuts her guts out in the last scene." "No way! I saw it when I was nine and there was no such thing!" So she keeps bugging me about it and I finally said okay, but I just know this is going to be another Faust LOL.
A week before the show my mom is going on about how excited she is to be seeing a Gilbert and Sullivan show. Pardon? Madame Butterfly is so NOT Gilbert and Sullivan! Finally I figured out that mom was thinking of The Mikado, which, to give her some credit, does have Japanese characters also. Needless to say, the suicide in the final scene of Madame Butterfly came as something of a shock to her. Babygirl took in in stride (I HAD warned her) but argued that Butterfly just "should have divorced that loser and gotten on with her life."
Between the two of them I had all I could do to not simply laugh out loud in the middle of a death scene.
We are going to see Peter Pan tomorrow. That should be easier to handle.
DeeDee
Now, I love music. And my tastes range widely, from Eminem to Josh Groban (who, by the way, is Babygirl's favorite after Selena). But opera has never really been my gig. But that was, honestly, before I ever got to SEE an opera. So although I'm still not a fan of listening to it, I do like to watch it, especially with my little one.
But I have learned something important about opera. It isn't just music, and pretty costumes. It's libretto. And the words to opera add up to some pretty incredibly heavy themes. I made the mistake of taking my baby, then aged nine, to see Faust. The libretto is flashed for the ignorant unilingual among us on a screen above the stage. I am reading this to Babygirl as we go along. But really, how does one explain a deal with the Devil that returns you to your youth so you can seduce an innocent maiden, get her pregnant, abandon her so she loses her mind and kills the baby? And then she choses the death penalty rather than make a deal with Faust and the Devil to extend her freedom?
So I've learned to check ahead.
Three weeks ago my mom called. She wanted to go and see Madame Butterfly and take Babygirl with her. Hmmmm.... "Mom, it's a pretty dark story. Butterfly cuts her guts out in the last scene." "No way! I saw it when I was nine and there was no such thing!" So she keeps bugging me about it and I finally said okay, but I just know this is going to be another Faust LOL.
A week before the show my mom is going on about how excited she is to be seeing a Gilbert and Sullivan show. Pardon? Madame Butterfly is so NOT Gilbert and Sullivan! Finally I figured out that mom was thinking of The Mikado, which, to give her some credit, does have Japanese characters also. Needless to say, the suicide in the final scene of Madame Butterfly came as something of a shock to her. Babygirl took in in stride (I HAD warned her) but argued that Butterfly just "should have divorced that loser and gotten on with her life."
Between the two of them I had all I could do to not simply laugh out loud in the middle of a death scene.
We are going to see Peter Pan tomorrow. That should be easier to handle.
DeeDee
Thursday, October 20, 2011
Week Twenty-six......Half a Year
I started thinking about this post nearly three months ago, wondering where we'd be at this point. After all, we had just found out then that there was no real hope of getting a kidney before dialysis became a necessity, that things were going from bad to worse, and finally getting the hang of the idea that we had a very sick little girl on our hands.
Compared to then, I feel almost normal. People ask me how I'm doing and I'm able to respond, "Good." It's true as far as it goes, but actually what I decided to do was to re-define "good" so that I could say it and be honest. After all, even I've gotten a little bored with only having drama and sorrow to report. I can't imagine how tired my friends and co-workers are of hearing it!
But the beauty of redefining what constitutes a good day is that you have more of them. If we only wake up once or twice a night, it's a good day. If we get to sleep through? It's a GREAT day. Sunshine? Great day. Rain without danger of flash floods? Good day. Grandbaby content to walk the dog with me? Great day. Grandbaby cranky but I get to hold her anyway? Good day. My brain functioning well on meds with no migraine? Great day! New contractor making progress on new bathroom? GREAT day.
See? It's simple. And it will keep working as long as there really isn't any new drama. But this six month mark still feels like a huge milestone. When I look back, and think how we sort of expected to have a new kidney by now, and figured that a new kidney would actually solve all the problems, I see we've had to come a ways toward accepting our new reality. And while I'm ready to carry on as long as needed to keep Babygirl's life as well-balanced as possible, I still have a huge problem with imagining that we will be in exactly this same position when we hit the one year mark.
DeeDee
Compared to then, I feel almost normal. People ask me how I'm doing and I'm able to respond, "Good." It's true as far as it goes, but actually what I decided to do was to re-define "good" so that I could say it and be honest. After all, even I've gotten a little bored with only having drama and sorrow to report. I can't imagine how tired my friends and co-workers are of hearing it!
But the beauty of redefining what constitutes a good day is that you have more of them. If we only wake up once or twice a night, it's a good day. If we get to sleep through? It's a GREAT day. Sunshine? Great day. Rain without danger of flash floods? Good day. Grandbaby content to walk the dog with me? Great day. Grandbaby cranky but I get to hold her anyway? Good day. My brain functioning well on meds with no migraine? Great day! New contractor making progress on new bathroom? GREAT day.
See? It's simple. And it will keep working as long as there really isn't any new drama. But this six month mark still feels like a huge milestone. When I look back, and think how we sort of expected to have a new kidney by now, and figured that a new kidney would actually solve all the problems, I see we've had to come a ways toward accepting our new reality. And while I'm ready to carry on as long as needed to keep Babygirl's life as well-balanced as possible, I still have a huge problem with imagining that we will be in exactly this same position when we hit the one year mark.
DeeDee
Thursday, October 13, 2011
Week Twenty-five.....The Donor Search.......
We've had posters of Babygirl's cute little face distributed all over by anyone on the move from here to anywhere. Periodically I get a random call from somewhere, asking about her and whether we still need a kidney. Well, yes, as a matter of fact we do.....
I am still amazed by these calls. Humbled. Impressed. The vast majority are from other moms, who see her face and her age and pray that someone somewhere would do for their child what I am asking them to do for mine. In the past three weeks I have sent out five information packets, and sit with my fingers crossed.
But yesterday I got a call that was less than typical. It was a man, to begin with. Not that we haven't had male volunteers, but all of the men so far are people who know Babygirl personally. This gentleman had heard of our daughter via a church newsletter (which, by the way, I had no idea was going out regularly in our district). He told me that his dad had received a kidney from his aunt more than 30 years ago. The kidney survived 25 years, and his dad a few years more.
I gave him the standard spiel: under 50 years of age, good health, no diabetes or high blood pressure, and acceptable body mass index. He met all but the last. But his next sentence astonished me: "Let me see if I am a match. If the only problem they have with my donation is my size I PROMISE you I will do what it takes to lose the weight."
To me, this is breathtaking, absolutely stunning determination to pay back what someone else did to give him a father for his childhood and adulthood. I understand what called to him about Babygirl's story, but he could have been tugged in this direction for any other child who needed him. And somehow, he waited for us.
DeeDee
I am still amazed by these calls. Humbled. Impressed. The vast majority are from other moms, who see her face and her age and pray that someone somewhere would do for their child what I am asking them to do for mine. In the past three weeks I have sent out five information packets, and sit with my fingers crossed.
But yesterday I got a call that was less than typical. It was a man, to begin with. Not that we haven't had male volunteers, but all of the men so far are people who know Babygirl personally. This gentleman had heard of our daughter via a church newsletter (which, by the way, I had no idea was going out regularly in our district). He told me that his dad had received a kidney from his aunt more than 30 years ago. The kidney survived 25 years, and his dad a few years more.
I gave him the standard spiel: under 50 years of age, good health, no diabetes or high blood pressure, and acceptable body mass index. He met all but the last. But his next sentence astonished me: "Let me see if I am a match. If the only problem they have with my donation is my size I PROMISE you I will do what it takes to lose the weight."
To me, this is breathtaking, absolutely stunning determination to pay back what someone else did to give him a father for his childhood and adulthood. I understand what called to him about Babygirl's story, but he could have been tugged in this direction for any other child who needed him. And somehow, he waited for us.
DeeDee
Tuesday, September 20, 2011
Week Twenty-two - More Gratitude....................
Once you start counting your blessings, more of them become obvious. So I am going to mention a few that I forgot, or at least one that has appeared since my last post.
Sunday I needed to take Babygirl to the tertiary center for two doctor visits. One with anaesthesia, so they could see that she was healthy enough to survive sleeping through a five hour procedure. And one with pulmonology since (she has a history of asthma), to make sure she is breathing well enough to survive transplatation. We had no difficulty with either exam,since she just had her first surgey without complications, and since her last asthma attack was about seven years ago.
But what am most grateful for is that a good friend who lives about a thousand miles away suddenly turned up at my door while I was loading up to leave. You see, I had this insane plan to run Babygirl's gravity dialysis IN THE CAR while we were driving the three hours to my sister-in-law's house. The principle of that is that you dump in a liter or so of fluid, leave it in for an hour and then drain it out, repeat times six. I figured we could get half of it done on the road, half at my sister-in-laws's house, and then be able to SLEEP. But my friend, who has known me since we took a prenatal exercise class together twenty-two years ago, looked at me and said, "You are in no condition to drive. I'll take you."
Now, seriously. She drove from Florida. To Boston. And then five hours HERE. And she wants to hop in her car and drive another three hours? And back the next day, all while her lunatic friend juggles dialysis bottles on her garment hooks?
That's the kind of friends I have.
I'd be insane not to be grateful. So she drove, we caught up with each other's lives, and I ran the gravity dialysis for the first time. Needless to say it was a learning experience. Can it be done in a car? Yup. Is it a good idea? Not bad actually, but better maybe on a longer journey. I screwed up enough that she got three runs instead of six, but I figured that was better than skipping altogether.
And after our appointments I stopped at the transplant unit to drop off a copy of our local heart doctors visit (done to make sure her high blood pressure hasn't damaged her heart - it hasn't). They kept us an extra hour to have me sign permission to get her on the active transplant list and draw a tube of blood.
So now we are listed in two states! Yippee! And it WAS bliss to sleep a whole night. Now, if it isn't to much to ask, I'd like to sleep a whole night in the same bed as my husband ;o)
DeeDee
Sunday I needed to take Babygirl to the tertiary center for two doctor visits. One with anaesthesia, so they could see that she was healthy enough to survive sleeping through a five hour procedure. And one with pulmonology since (she has a history of asthma), to make sure she is breathing well enough to survive transplatation. We had no difficulty with either exam,since she just had her first surgey without complications, and since her last asthma attack was about seven years ago.
But what am most grateful for is that a good friend who lives about a thousand miles away suddenly turned up at my door while I was loading up to leave. You see, I had this insane plan to run Babygirl's gravity dialysis IN THE CAR while we were driving the three hours to my sister-in-law's house. The principle of that is that you dump in a liter or so of fluid, leave it in for an hour and then drain it out, repeat times six. I figured we could get half of it done on the road, half at my sister-in-laws's house, and then be able to SLEEP. But my friend, who has known me since we took a prenatal exercise class together twenty-two years ago, looked at me and said, "You are in no condition to drive. I'll take you."
Now, seriously. She drove from Florida. To Boston. And then five hours HERE. And she wants to hop in her car and drive another three hours? And back the next day, all while her lunatic friend juggles dialysis bottles on her garment hooks?
That's the kind of friends I have.
I'd be insane not to be grateful. So she drove, we caught up with each other's lives, and I ran the gravity dialysis for the first time. Needless to say it was a learning experience. Can it be done in a car? Yup. Is it a good idea? Not bad actually, but better maybe on a longer journey. I screwed up enough that she got three runs instead of six, but I figured that was better than skipping altogether.
And after our appointments I stopped at the transplant unit to drop off a copy of our local heart doctors visit (done to make sure her high blood pressure hasn't damaged her heart - it hasn't). They kept us an extra hour to have me sign permission to get her on the active transplant list and draw a tube of blood.
So now we are listed in two states! Yippee! And it WAS bliss to sleep a whole night. Now, if it isn't to much to ask, I'd like to sleep a whole night in the same bed as my husband ;o)
DeeDee
Saturday, September 17, 2011
Things to be grateful for.....
Since the last few posts have been, um, a bit negative and depressing, I thought that this morning I would start with a bunch of the things I am grateful for.
Our city just survived the worst flood in its history and our home was not damaged or even wet.
My oldest daughter. She is raising three kids, building a new house, surviving in interim housing, and still praising God every Sunday morning. I am grateful for her husband as well (it's his birthday today!) for being a loving and supportive man. I am proud of them both.
My next oldest. She just graduated from an Ivy League school, and she's in California right now, about to leave for France, then Italy, on a wine-studying scholarship. She's one of only 10 people nationally to win this award. She has a job and an apartment lined up in NYC when she comes home. I am so incredibly proud of her.
My middle daughter. She and her boyfriend survived the flood and are not complaining at all about losing everything from their first floor. They just figure they'll start over! Their baby girl is the cutest, but she is one of those needy demanding little souls, but they take turns and handle it pretty well! Living with grampa and gramma for a few weeks until the apartment is cleaned up may help ease that a bit - at least she doesn't have to cook! I am proud of her parenting skills, and of her boyfriend's determination to support them all so she can stay home at least a year with the baby.
My next youngest daughter. She is juggling collge and early pregnancy, making wedding plans and all of that. She's clearly exhausted, but hanging in. I am truly proud of her too. Her boyfriend also lost a great deal in the flood, as did his mom and siblings, so he's here to, and he never says "no" when I ask for help!
Babygirl. I am so proud of her. She picks her tired little self up in the morning, heads off for school, and almost never complains about how radically her life has changed. The other day she told me, "The only thing I like about this is that when I get my new kidney, I'll be able to eat chocolate!"
And lets not forget Hubby. Whosever turn it is to set up, it is both of us who listen to tech support, amusing each other with funny faces and rude gestures. And cleaning up to remodel and prepare for our next stage of life, which was SUPPOSED to be a nearly empty nest LOLOL. In a way I guess I am proud of us both.
There is always someone to play a game with. God seems never to let the population in our house drop below six (three just moved out, four just moved in, and we are up to eight). And when someone tells me, "Man, your hands are FULL!" I usually say, "Well, it's better than having them empty."
DeeDee
Our city just survived the worst flood in its history and our home was not damaged or even wet.
My oldest daughter. She is raising three kids, building a new house, surviving in interim housing, and still praising God every Sunday morning. I am grateful for her husband as well (it's his birthday today!) for being a loving and supportive man. I am proud of them both.
My next oldest. She just graduated from an Ivy League school, and she's in California right now, about to leave for France, then Italy, on a wine-studying scholarship. She's one of only 10 people nationally to win this award. She has a job and an apartment lined up in NYC when she comes home. I am so incredibly proud of her.
My middle daughter. She and her boyfriend survived the flood and are not complaining at all about losing everything from their first floor. They just figure they'll start over! Their baby girl is the cutest, but she is one of those needy demanding little souls, but they take turns and handle it pretty well! Living with grampa and gramma for a few weeks until the apartment is cleaned up may help ease that a bit - at least she doesn't have to cook! I am proud of her parenting skills, and of her boyfriend's determination to support them all so she can stay home at least a year with the baby.
My next youngest daughter. She is juggling collge and early pregnancy, making wedding plans and all of that. She's clearly exhausted, but hanging in. I am truly proud of her too. Her boyfriend also lost a great deal in the flood, as did his mom and siblings, so he's here to, and he never says "no" when I ask for help!
Babygirl. I am so proud of her. She picks her tired little self up in the morning, heads off for school, and almost never complains about how radically her life has changed. The other day she told me, "The only thing I like about this is that when I get my new kidney, I'll be able to eat chocolate!"
And lets not forget Hubby. Whosever turn it is to set up, it is both of us who listen to tech support, amusing each other with funny faces and rude gestures. And cleaning up to remodel and prepare for our next stage of life, which was SUPPOSED to be a nearly empty nest LOLOL. In a way I guess I am proud of us both.
There is always someone to play a game with. God seems never to let the population in our house drop below six (three just moved out, four just moved in, and we are up to eight). And when someone tells me, "Man, your hands are FULL!" I usually say, "Well, it's better than having them empty."
DeeDee
Monday, September 12, 2011
Week Twenty.....Machine failure
Last Thursday (I think it was Thursday. Sleep deprivation makes it tough to tell.), the dialysis machine announced as I was setting it up that it had failed "The Bubble Valve Test." It advised me to push the "Okay" button to acknowledge this failure and to re-run the test. I can tell by the sound of the machine that SOMETHING isn't working because instead of groaning and creaking it's peeing into the drainage container (oh, this machine is quiet, but it still makes plenty of identifiable sounds LOL). I got the same message and instruction several times over without having the machine make any reasonable suggestion for how many times failing The Bubble Valve Test made it a bad idea to proceed. But about the fifth time, I figured it was time to pull the cartridge and set up again. Well, it seemed like time to ME, but the machine would not permit me to pull the cartridge. So I powered off, started over, and it still would not allow me to remove the cartridge, and I still couldn't pass The Test.
Time to call hubby. He, of course, repeats all of the above. While he is frustrating himself, I find the manual, find the list of failure warnings, and confirm that warning 30.1 IS indeed what it claims to be. Sadly, however, the manual also does not give any advice about what to about said warning.
Time to call tech support (they are starting to get to know us LOL). We discuss the problem, while hubby continues to randomly fiddle with the machine. Since the thing is peeing instead of setting itself up, he clamps the pee tube (yellow clamp, get it?) and suddenly we are no longer failing The Test.
Tech support is mystified, both by the failure of The Test and the inexplicable resolution of the problem. They recommend that we remove the cartridge (which we now CAN do now that we've PASSED The Test). Well, this goes on, and on, and on and finally, after burning through several days' worth of supplies, Tech support decides that the machine just isn't working. So they offer to FedEx us a new one by morning, with supplies to go with it.
Hubby and I burst into laughter. Tech support is utterly dumbfounded. You see, they don't really know where we are, and they are in Wisconsin. But we here in the Northeast are in the Flood that floated Noah, and we can't even get to a store for a loaf of bread, let alone a truck with a pallet full of supplies. The National Guard is evacuating our kids from their low-lying homes, the airport is closed, and there isn't an open bridge anywhere in our two-river city.
Nothing daunted, Tech support says that if worse comes to worst, the National Guard will help them. Dang, I feel kinda important!
It took a day and a half instead of half a day. But they did it. And I finally figured out what the bubble valves were.
DeeDee
Time to call hubby. He, of course, repeats all of the above. While he is frustrating himself, I find the manual, find the list of failure warnings, and confirm that warning 30.1 IS indeed what it claims to be. Sadly, however, the manual also does not give any advice about what to about said warning.
Time to call tech support (they are starting to get to know us LOL). We discuss the problem, while hubby continues to randomly fiddle with the machine. Since the thing is peeing instead of setting itself up, he clamps the pee tube (yellow clamp, get it?) and suddenly we are no longer failing The Test.
Tech support is mystified, both by the failure of The Test and the inexplicable resolution of the problem. They recommend that we remove the cartridge (which we now CAN do now that we've PASSED The Test). Well, this goes on, and on, and on and finally, after burning through several days' worth of supplies, Tech support decides that the machine just isn't working. So they offer to FedEx us a new one by morning, with supplies to go with it.
Hubby and I burst into laughter. Tech support is utterly dumbfounded. You see, they don't really know where we are, and they are in Wisconsin. But we here in the Northeast are in the Flood that floated Noah, and we can't even get to a store for a loaf of bread, let alone a truck with a pallet full of supplies. The National Guard is evacuating our kids from their low-lying homes, the airport is closed, and there isn't an open bridge anywhere in our two-river city.
Nothing daunted, Tech support says that if worse comes to worst, the National Guard will help them. Dang, I feel kinda important!
It took a day and a half instead of half a day. But they did it. And I finally figured out what the bubble valves were.
DeeDee
Thursday, September 8, 2011
Financial Alternatives.....
With the grim financial information that we have gathered, we have obviously come to the conclusion that we need to do some serious work on balancing the budget. I don't know anyone in any profession who can cough up an extra $2900/month for any length of time.
I am still disabled. So I am unable to pick up extra work, which would actually come close to closing that gap. Hubby is really really needed at home to take care of babygirl so I can continue my almost-full-time work and maintain our health insurance. So we have no immediate way to increase income.
So...cut expenses. We have already started this process. We live in a two family house and have been using it as a one family, and are rapidly prepping it to return to two family status. This will increase our income by $700, and decrease our expenses by $200 (one less power bill). We are negotiating with our insurance. Turns out that if you argue a bit, they decrease the copayment for out-of-town specialists (if we don't have one like it in town) and dialysis to $25, so that decreases dialysis costs from $2250/month to $750, and saves us over $100/month on doctor visits. They will also pick up $900 of the $1000 copay for the surgery, eventually.
And, in two months, she will qualify for Medicare, which will pick up all of our dialysis costs! Whoohoo! So we have to hang on, fight, argue, fax, keep copies of EVERYTHING, document, document, document.
And survive.
DeeDee
I am still disabled. So I am unable to pick up extra work, which would actually come close to closing that gap. Hubby is really really needed at home to take care of babygirl so I can continue my almost-full-time work and maintain our health insurance. So we have no immediate way to increase income.
So...cut expenses. We have already started this process. We live in a two family house and have been using it as a one family, and are rapidly prepping it to return to two family status. This will increase our income by $700, and decrease our expenses by $200 (one less power bill). We are negotiating with our insurance. Turns out that if you argue a bit, they decrease the copayment for out-of-town specialists (if we don't have one like it in town) and dialysis to $25, so that decreases dialysis costs from $2250/month to $750, and saves us over $100/month on doctor visits. They will also pick up $900 of the $1000 copay for the surgery, eventually.
And, in two months, she will qualify for Medicare, which will pick up all of our dialysis costs! Whoohoo! So we have to hang on, fight, argue, fax, keep copies of EVERYTHING, document, document, document.
And survive.
DeeDee
Tuesday, September 6, 2011
Ongoing dialysis struggles......
Peritoneal dialysis has been a struggle for our daughter from the start. Each and every night since we started home dialysis (was it really August 22? I must redefine "eternity") she has awakened numerous times per night in pain from the suction of the fluid removal part of the cycle. We had permission to take two nights off this past weekend, and even though we didn't go camping as planned, we took those nights off anyway.
Restarting was less painful. I think the days off allowed for a bit more healing. Right about now would have been the surgeon's first preference for using the tube anyway. But remember what I said about wondering what we'd do if the power went out?
Well, we found out this morning. The machine misread something about a bag clamp, and at 4:30, after trying everything the manual said, I had to call the company hotline. They suggestioned all the things I'd already tried (maddening when you've been listening to an alarm for half an hour already) and then told me to power off and start over. That didn't work either, so we were told to disconnect her and attach a gravity drain. Well, I have 5 boxes of drain tubing (which we don't need). Three boxes of drain bags (which we don't use and won't work alone for this purpose). But we apparently lack the little blue hickeydoodle that allows us to hook her up to a gravity drain. Oh.
So we move on to the on-call nurse. The kid has 700cc's of fluid in her belly right now. The on-call nurse asks if she can handle that. Huh???? Oh, you mean when she's AWAKE??? Hard to say since she is never awake and upright during this part of her treatments! She always awakens on empty, not full. Nurse tells us to unhook her as if the treatment were done and leave the fluid in. Fortunately, she has an appointment at the dialysis center today, so they can drain her out there. Hopefully they will fill hubby in on what to do next, and we will get it all sorted.
And I was SLEEPING. She had only awakened once during treatment due to pain, instead of hourly as she had been doing. Dammit. I really miss sleeping!
DeeDee
Restarting was less painful. I think the days off allowed for a bit more healing. Right about now would have been the surgeon's first preference for using the tube anyway. But remember what I said about wondering what we'd do if the power went out?
Well, we found out this morning. The machine misread something about a bag clamp, and at 4:30, after trying everything the manual said, I had to call the company hotline. They suggestioned all the things I'd already tried (maddening when you've been listening to an alarm for half an hour already) and then told me to power off and start over. That didn't work either, so we were told to disconnect her and attach a gravity drain. Well, I have 5 boxes of drain tubing (which we don't need). Three boxes of drain bags (which we don't use and won't work alone for this purpose). But we apparently lack the little blue hickeydoodle that allows us to hook her up to a gravity drain. Oh.
So we move on to the on-call nurse. The kid has 700cc's of fluid in her belly right now. The on-call nurse asks if she can handle that. Huh???? Oh, you mean when she's AWAKE??? Hard to say since she is never awake and upright during this part of her treatments! She always awakens on empty, not full. Nurse tells us to unhook her as if the treatment were done and leave the fluid in. Fortunately, she has an appointment at the dialysis center today, so they can drain her out there. Hopefully they will fill hubby in on what to do next, and we will get it all sorted.
And I was SLEEPING. She had only awakened once during treatment due to pain, instead of hourly as she had been doing. Dammit. I really miss sleeping!
DeeDee
Saturday, September 3, 2011
Week Nineteen - Financial Reassessment......
I don't think it's possible to plan ahead for a medical disaster of epic proportions. I think that everyone knows that having health insurance is a good idea, but there is no way for anyone, layperson or otherwise, to be able to think up all of the questions that would need to be asked for every possible disease scenario. Cancer? Heart disease? Rare pediatric illness requiring input from several hospitals? How could anybody know what they might or might not be covered for for diseases they may or may not get?
Here's the general gist of how OUR plan works per visit (yours, of course, would be so different as to make this discussion almost irrelevant except for a 'heads up' about what you don't know):
Our doc: $20
Our in-town walk-in or associated specialists: $25
Our local out-of-town secondary specialists: $75
Tertiary specialists participating in our insurance: $75
Proceedures (surgery, xray, lab etc) done by local specialists: included in office visit
Proceedures done by secondary and tertiary specialists: $1,000 (yes, per visit)
Copayment for dialysis: $75 per treatment (and we "treat" DAILY).
So here's the general gist of how that works out in dollars and cents for our budget:
In December I was hospitalized and transferred to an out-of-network local hospital ($100 for ER and admission, $1,000 for other hospital)
From November to now I have not had one month go by without at least one doctor's appointment for me, all local ($45/month minumum)
In February, hubby had surgery ($25 for surgeon, $75 for anaesthesia, $45 for 2 preliminary doctor visits, and $300 in $25/visit copays for PT)
March, same for me, with slightly less PT
Don't forget dental visits for kids and us ($300) and glasses ($300)
Starting in April, no fewer that 2 visits per week with somebody somewhere for Babygirl, usually not local ($150/week)
Surgery $1,000
Dialysis training week ($75/day = 300)
Daily dialysis from August 22 - now = $900.
Ongoing dialysis costs: $2,250/month.
Current outlay for health care (not counting what I actually PAY for the health care) since November of 2010:
Roughly $6000 in out-of-pocket costs. And I forgot medication copayments, increased grocery costs to manage Babygirl's horrible diet, gas costs for the frequent 150 mile/round trip to the secondary center, and mileage and tolls for our trips to the tertiary center. That's all well over $650/month, and that's about to increase due to the daily dialysis to an incredible (drum roll, please....) $2900/month.
Add to this that I've been disabled and on part-time work since mid-December. I am almost out of sick time, and I had 1000 hours banked as of last November. I also used to work a couple of days a month in the ER or walk-ins for and extra few hundred dollars/month, so that is gone, decreasing our monthly income even more.
I feel a certain nausea thinking about this. No wonder Pollyanna is having such a hard time!
DeeDee
Here's the general gist of how OUR plan works per visit (yours, of course, would be so different as to make this discussion almost irrelevant except for a 'heads up' about what you don't know):
Our doc: $20
Our in-town walk-in or associated specialists: $25
Our local out-of-town secondary specialists: $75
Tertiary specialists participating in our insurance: $75
Proceedures (surgery, xray, lab etc) done by local specialists: included in office visit
Proceedures done by secondary and tertiary specialists: $1,000 (yes, per visit)
Copayment for dialysis: $75 per treatment (and we "treat" DAILY).
So here's the general gist of how that works out in dollars and cents for our budget:
In December I was hospitalized and transferred to an out-of-network local hospital ($100 for ER and admission, $1,000 for other hospital)
From November to now I have not had one month go by without at least one doctor's appointment for me, all local ($45/month minumum)
In February, hubby had surgery ($25 for surgeon, $75 for anaesthesia, $45 for 2 preliminary doctor visits, and $300 in $25/visit copays for PT)
March, same for me, with slightly less PT
Don't forget dental visits for kids and us ($300) and glasses ($300)
Starting in April, no fewer that 2 visits per week with somebody somewhere for Babygirl, usually not local ($150/week)
Surgery $1,000
Dialysis training week ($75/day = 300)
Daily dialysis from August 22 - now = $900.
Ongoing dialysis costs: $2,250/month.
Current outlay for health care (not counting what I actually PAY for the health care) since November of 2010:
Roughly $6000 in out-of-pocket costs. And I forgot medication copayments, increased grocery costs to manage Babygirl's horrible diet, gas costs for the frequent 150 mile/round trip to the secondary center, and mileage and tolls for our trips to the tertiary center. That's all well over $650/month, and that's about to increase due to the daily dialysis to an incredible (drum roll, please....) $2900/month.
Add to this that I've been disabled and on part-time work since mid-December. I am almost out of sick time, and I had 1000 hours banked as of last November. I also used to work a couple of days a month in the ER or walk-ins for and extra few hundred dollars/month, so that is gone, decreasing our monthly income even more.
I feel a certain nausea thinking about this. No wonder Pollyanna is having such a hard time!
DeeDee
Tuesday, August 30, 2011
Optimism with a Capital O......
I have always been an optimist. Hubby frequently refers to me as Pollyanna (and I call him Eeyore LOL). One of my guilty pleasures is actually a subscription to O magazine. Yes, a subscription, not just covert readings in doctors offices (although I confess that that was where I caught the bug). Now, given my work schedule, you have to realize that I may be the last person in America to have never actually watched The Oprah Winfrey Show (nor Dr. Oz), but I have, since "The Color Purple" come to admire her spirit and her life. And I SO relate to that big wagon full of fat that keeps coming and going!
This morning I had a moment to read, and I caught "In Praise of Rose-Colored Glasses" by Martha Beck. http://www.oprah.com/spirit/Reduce-Your-Suffering-How-to-Have-a-Positive-Outlook-On-Life
She quotes poet Jack Gilbert: "We must have the stubbornness to accept our gladness in the ruthless furnace of this world."
Well. Wow. I think that quote alone is going to keep me pondering for a while. It actually fits my life philosophy very well, which up until now I might have been summarized: "Life stinks but you can still laugh at it." Or some ruder version thereof that may have also included laughing at other people (oops).
There is a section of the article outlining the idea that it only takes 90 seconds to process the initial stress of a negative feeling. Not that those feelings don't return, they do, but if you let it flow, ride it out, and let it go, it's gone. Again, something that I inherently FEEL. I do much better when I have time to process things for a minute, or ninety seconds if you insist. I am that person who has cloudbursts of emotion: A moment of temper, a storm of weeping, a burst of exuberance. Now that we don't have tragedy upon hysteria based on yet more bad news (for at least one week at least) pouring out of our world's "furnace", I am feeling more balanced. And now, I want to go back to stubbornly accepting gladness. I want Pollyanna back, and I think I can key in on finding her most of the time.
It's really all already in the Bible : "Weeping may endure for a night, but joy comes in the morning."
DeeDee
This morning I had a moment to read, and I caught "In Praise of Rose-Colored Glasses" by Martha Beck. http://www.oprah.com/spirit/Reduce-Your-Suffering-How-to-Have-a-Positive-Outlook-On-Life
She quotes poet Jack Gilbert: "We must have the stubbornness to accept our gladness in the ruthless furnace of this world."
Well. Wow. I think that quote alone is going to keep me pondering for a while. It actually fits my life philosophy very well, which up until now I might have been summarized: "Life stinks but you can still laugh at it." Or some ruder version thereof that may have also included laughing at other people (oops).
There is a section of the article outlining the idea that it only takes 90 seconds to process the initial stress of a negative feeling. Not that those feelings don't return, they do, but if you let it flow, ride it out, and let it go, it's gone. Again, something that I inherently FEEL. I do much better when I have time to process things for a minute, or ninety seconds if you insist. I am that person who has cloudbursts of emotion: A moment of temper, a storm of weeping, a burst of exuberance. Now that we don't have tragedy upon hysteria based on yet more bad news (for at least one week at least) pouring out of our world's "furnace", I am feeling more balanced. And now, I want to go back to stubbornly accepting gladness. I want Pollyanna back, and I think I can key in on finding her most of the time.
It's really all already in the Bible : "Weeping may endure for a night, but joy comes in the morning."
DeeDee
Sunday, August 28, 2011
Hurricanes.......
We are in the midst of surviving Hurricane Ilene. Oh, not to worry - we are many miles away from the ocean and the nearest river would have to rise to Armaggedon proportions to hit us. There are flash floods all around us, and some water in the basement, but overall we will be fine.
But suddenly, we have to be concerned about power outages. Currently 6,000 people in our county are without power. Well, heck. it's summer, not too cold, and we can manage with candles and such if we need to. Or we could, last week. THIS week we have to figure out what we would do with Babygirl's dialysis machine. If the power goes out during a treatment, it locks down. If we were without power for more than a night we'd have to go to gravity fed dialysis, for which I think we have all the equipment (although hubby says we are missing one piece). But hey, the classes were already a few days ago, and they handled that subject on the very first day.
Oh my goodness. I have to sharpen up a little, which is tough to do on so little sleep.
I'm off to bed.
DeeDee
But suddenly, we have to be concerned about power outages. Currently 6,000 people in our county are without power. Well, heck. it's summer, not too cold, and we can manage with candles and such if we need to. Or we could, last week. THIS week we have to figure out what we would do with Babygirl's dialysis machine. If the power goes out during a treatment, it locks down. If we were without power for more than a night we'd have to go to gravity fed dialysis, for which I think we have all the equipment (although hubby says we are missing one piece). But hey, the classes were already a few days ago, and they handled that subject on the very first day.
Oh my goodness. I have to sharpen up a little, which is tough to do on so little sleep.
I'm off to bed.
DeeDee
Thursday, August 25, 2011
Certified.....
Both hubby and I are now officially certified for home dialysis. I went 3 days, he 4, and Babygirl daily for all, since we got to do all of our practicing on her. We accomplished several things.
Most important, our daughter has begun to distinguish the fear of pain from the pain itself. This is important. Extremely important. And she has been given some sense of control over the entire process. I cannot thank the dialysis team enough for this.
Second, hubby and I have also been given back a sense of control. They have listened to everything from scheduling issues ("Do we HAVE to bring her back on the very first day of middle school???") to concerns about our competency to handle all of this at home.
Third, they made us clean our house. Due to painting and shifting for our daughter's new room, the rest of the house got, well, um, disgusting. Yesterday, at the end of our day, the nurse told us that she and the social worker would be following hubby home the next day to inspect Babygirls room - you know, check out the electric supply and make sure we were ready to go.
Well. I know from our adoption social workers that they know we are going to freak out and clean, so on top of 8 hours of driving and dialysis training, we took the whole house apart, taking time to grill a couple of steaks and steam some broccoli, since they are concerned about her protein intake. But as one of our adoption social workers told me, "You can't fix filthy in 24 hours." She was, of course, correct. And we aren't filthy. But the road in front of our house is under construction and every time I wipe anything with a damp cloth I get mud! So hubby and I and Babygirl and nephew (well, him a little anyway) went to work. And worked and worked.
So today, I am exhausted. I had to work. Hubby had to do the last day of training alone, and deal with the home visit, which went well.
We bought KFC for dinner. Sometimes it's all you can do. Coleslaw is a veggie, right?
DeeDee
Most important, our daughter has begun to distinguish the fear of pain from the pain itself. This is important. Extremely important. And she has been given some sense of control over the entire process. I cannot thank the dialysis team enough for this.
Second, hubby and I have also been given back a sense of control. They have listened to everything from scheduling issues ("Do we HAVE to bring her back on the very first day of middle school???") to concerns about our competency to handle all of this at home.
Third, they made us clean our house. Due to painting and shifting for our daughter's new room, the rest of the house got, well, um, disgusting. Yesterday, at the end of our day, the nurse told us that she and the social worker would be following hubby home the next day to inspect Babygirls room - you know, check out the electric supply and make sure we were ready to go.
Well. I know from our adoption social workers that they know we are going to freak out and clean, so on top of 8 hours of driving and dialysis training, we took the whole house apart, taking time to grill a couple of steaks and steam some broccoli, since they are concerned about her protein intake. But as one of our adoption social workers told me, "You can't fix filthy in 24 hours." She was, of course, correct. And we aren't filthy. But the road in front of our house is under construction and every time I wipe anything with a damp cloth I get mud! So hubby and I and Babygirl and nephew (well, him a little anyway) went to work. And worked and worked.
So today, I am exhausted. I had to work. Hubby had to do the last day of training alone, and deal with the home visit, which went well.
We bought KFC for dinner. Sometimes it's all you can do. Coleslaw is a veggie, right?
DeeDee
Thursday, July 14, 2011
Week Ten - Upcoming Surgery.....
We had a doctors visit this week. We spent a LONG time with the NP, discussing how poorly she is doing (as far as her numbers are concerened), and how at odds that is with how she generally looks. We refer to her frequently as "the healthiest sick kid you'll ever see." The NP decided to pull the pediatric surgeon in, since he was seeing other clinic patients, to set up placement of a peritoneal dialysis (PD) catheter.
There are two ways to do dialysis - hemo (blood) or peritoneal (gut lining). Apparently, kids don't do as well as adults on intermittant hemodialysis, and although it can be set up at home (yeah, you get your own machine and everything!), it is time consuming and requires the patient to sit for a few hours. Now, me? Give me a book or a laptop, and I can sit 'til my butt is visibly larger, but Babygirl? Not so much.
So I think everybody gets the general idea behind hemodialysis. They stick a needle in your arm, take out the blood, run it through a machine that cleans it up and put it back.
PD doesn't work this way. A catheter is permanently inserted through the abdomenal wall. Then the patient (or family) runs a large amount of clear fluid (2 liters) through the tube into the peritoneal cavity and leave it there for a few hours. Then the fluid is drained out, by which time it has turned yellow (Voila! Instant Pee!) because the osmotic forces of the fluid content have sucked the toxins out of your blood and into the fluid. The beauty of this concept is that it can be done at night - fill'er up at bedtime, drain it out in the morning, and off to school you go!
Of course, it's really not that simple. Now, I have seen tubes that have been placed through the abdomenal wall into the stomach for feeding purposes. Because of the way they are made, they do not connect to the peritoneal space, and the tract is short and the opening small. Same with ostomy holes. But the description of this proceedure gave me the whim-whams.
The primary incision is in the belly button. The tube itself, more than a foot long. Half dangles inside the peritoneal cavity down to the area of the appendix, low on the right side. The other half is TUNNELED (ow ow ow thank God she'll be asleep but that baby's gonna hurt when she wakes up!) to the left upper abdomen, near the lower ribs. The purpose of the tunnel is to prevent peritonitis, infection of the peritoneum, which can lead to so much scar tissue as to make further PD impossible, not to mention that it is, in and of itself, dangerous and very painful.
It takes a month for a PD catheter system to "mature", She needs it NOW. But we have swim camp. And horse camp. And our annual family beach week, all in a row. They want her to have what's left of a normal summer.
So surgery is scheduled for August 15.
DeeDee
There are two ways to do dialysis - hemo (blood) or peritoneal (gut lining). Apparently, kids don't do as well as adults on intermittant hemodialysis, and although it can be set up at home (yeah, you get your own machine and everything!), it is time consuming and requires the patient to sit for a few hours. Now, me? Give me a book or a laptop, and I can sit 'til my butt is visibly larger, but Babygirl? Not so much.
So I think everybody gets the general idea behind hemodialysis. They stick a needle in your arm, take out the blood, run it through a machine that cleans it up and put it back.
PD doesn't work this way. A catheter is permanently inserted through the abdomenal wall. Then the patient (or family) runs a large amount of clear fluid (2 liters) through the tube into the peritoneal cavity and leave it there for a few hours. Then the fluid is drained out, by which time it has turned yellow (Voila! Instant Pee!) because the osmotic forces of the fluid content have sucked the toxins out of your blood and into the fluid. The beauty of this concept is that it can be done at night - fill'er up at bedtime, drain it out in the morning, and off to school you go!
Of course, it's really not that simple. Now, I have seen tubes that have been placed through the abdomenal wall into the stomach for feeding purposes. Because of the way they are made, they do not connect to the peritoneal space, and the tract is short and the opening small. Same with ostomy holes. But the description of this proceedure gave me the whim-whams.
The primary incision is in the belly button. The tube itself, more than a foot long. Half dangles inside the peritoneal cavity down to the area of the appendix, low on the right side. The other half is TUNNELED (ow ow ow thank God she'll be asleep but that baby's gonna hurt when she wakes up!) to the left upper abdomen, near the lower ribs. The purpose of the tunnel is to prevent peritonitis, infection of the peritoneum, which can lead to so much scar tissue as to make further PD impossible, not to mention that it is, in and of itself, dangerous and very painful.
It takes a month for a PD catheter system to "mature", She needs it NOW. But we have swim camp. And horse camp. And our annual family beach week, all in a row. They want her to have what's left of a normal summer.
So surgery is scheduled for August 15.
DeeDee
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