Babygirl awoke this morning with a sore throat, fever and bellyache. Fever and bellyache scare me. After all, what if it's peritonitis? But the dialysate is clear, and her tummy is soft. So I decided that she should stay home from school, and call the family doc and the dialysis nurse for further advice. Babygirl lays down on the couch and falls back asleep, and I carry on getting ready for work, Hubby all unaware of this little drama.
Then Hubby comes downstairs holding our cell phones, in the middle of a call on his, which he thrusts into my hand saying, "It's the hospital." The OTHER hospital.
Of course it is. And like last time, the first thing they say is, "We're calling to see how Babygirl is today." Well, this time at least I immediately understand the purpose of the call. Tears burn behind my eyes and I tell them, "She's sick." I fill them in on the details and watch Hubby's face go from hopeful to bewildered to crushed. "Well, she was just backup" the transplant nurse tells me. But I don't need to be told that the reason they HAVE backup is because there have been times in the past when the first and second choices have fallen through. And last time she was only two spots away from the top slot.
And I have less than twenty minutes to let this all go, get ready for work, and take care of people who come to me to fix THEIR problems. And that's tough to do because my phone keeps ringing - the family doc ("We can fit her in at eleven"), the dialysis center ("Don't worry about peritonitis if the fluid was clear."), Hubby ("Med list?"), the family doc again ("What shots did they give her at dialysis?"), and some random call I later figure out was a reminder for me to take my mom to the heart doctor later this week.
Turns out its "just a virus." "Can't you just call them and tell them to wait?" I am amazed at how many times today I've heard this. No, it can't wait, it musn't wait, someone needs that kidney as soon as possible. And I know that if they suppress her immune system while she's fighting a virus it could kill her AND the new kidney. And it isn't worth the risk either way. So somebody elses' child is getting a kidney today, and Merry Christmas to them.
And many, many many many prayers for the family who, six days before Christmas, have had to decide whether or not to donate their child's organs. And bless them many times over for choosing to do so.
And we get to celebrate Christmas at home. We almost missed Halloween last time. Well, if God doesn't want us to miss a holiday at home, there's lots of non-holiday time between New Year's and Easter. We'd be happy to go anytime......
DeeDee
Monday, December 19, 2011
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
Thursday, December 8, 2011
Week Thirty-three - Mixed News From the Dialysis Team......
We spent yesterday morning traveling to and from our monthly meeting with the team. And the "team" designation is really not an exaggeration. Nurse, nurse practitioner, dietician, social worker all see us each and every time we go. Every three months we have to collect a twenty-four hour urine specimen (yeah, I agree) and a sample of dialysis fluid to take along, and this was THAT month. They drew blood (each visit) and informed us that somewhere between last summer and last month, Babygirl managed to lose her immunity to Hepatitis B. There is no real way to explain why.
Well, that just stinks. It turns out that they screen all donors for hepatitis B antigen (the actual virus, indicating active infection) and antibodies (indicating immunity). If the donor is antigen positive, they are crossed off the donor list no matter what because they will certainly transmit that virus to the recipient. Since the recipient will be deliberately immunosuppressed after the surgery, that is an unacceptable risk. But if the test positive for the antibody only, it means that either they were vaccinated and it "took", or that they had the disease, got over it and are immune. But there is an ominous third possibility - that the donor has so little virus left in their blood that we can't detect it and partial immunity, in which case the virus could still be transmitted to a recipient who is not immune. Therefore they won't give an antibody positive kidney to an antibody negative recipient. And since nearly everybody under the age of twenty-five has been vaccinated, that eliminates a LOT of donors.
So. Babygirl rolled up her sleeve and got a quadruple dose of Hepatitis B vaccine divided into two shots (her choice to divide the large fluid volume). And she'll get it again next time we go, and again in six months. And the only complaint she's made about that is that the bandaids all itched. Really? Three pokes and that's it? I am, as I frequently am, humbled by her.
On the good news side, she is growing again. Her appetite suddenly went out of control a couple of weeks ago and she has put on two pounds and grown half an inch. It's not much compared to last year, but we'll take it! Her last labs were all okay, and we're hoping that this batch is okay too.
One of the things I noticed while waiting for our next appointment info was another child's urine collection container. Babygirl's had nearly two liters. The other had barely a tenth of that. We are so blest that she continues to get rid of water and potassium on her own - this would be unbelievably more challenging if she didn't, which is, frankly, frightening to imagine.
DeeDee
Well, that just stinks. It turns out that they screen all donors for hepatitis B antigen (the actual virus, indicating active infection) and antibodies (indicating immunity). If the donor is antigen positive, they are crossed off the donor list no matter what because they will certainly transmit that virus to the recipient. Since the recipient will be deliberately immunosuppressed after the surgery, that is an unacceptable risk. But if the test positive for the antibody only, it means that either they were vaccinated and it "took", or that they had the disease, got over it and are immune. But there is an ominous third possibility - that the donor has so little virus left in their blood that we can't detect it and partial immunity, in which case the virus could still be transmitted to a recipient who is not immune. Therefore they won't give an antibody positive kidney to an antibody negative recipient. And since nearly everybody under the age of twenty-five has been vaccinated, that eliminates a LOT of donors.
So. Babygirl rolled up her sleeve and got a quadruple dose of Hepatitis B vaccine divided into two shots (her choice to divide the large fluid volume). And she'll get it again next time we go, and again in six months. And the only complaint she's made about that is that the bandaids all itched. Really? Three pokes and that's it? I am, as I frequently am, humbled by her.
On the good news side, she is growing again. Her appetite suddenly went out of control a couple of weeks ago and she has put on two pounds and grown half an inch. It's not much compared to last year, but we'll take it! Her last labs were all okay, and we're hoping that this batch is okay too.
One of the things I noticed while waiting for our next appointment info was another child's urine collection container. Babygirl's had nearly two liters. The other had barely a tenth of that. We are so blest that she continues to get rid of water and potassium on her own - this would be unbelievably more challenging if she didn't, which is, frankly, frightening to imagine.
DeeDee
Monday, December 5, 2011
Machine Machinations......
Just about the time I think I can take advantage of the machine, it decides to make that impossible. After nearly two full months of peaceful coexistance, we drew The Red Screen of Doom again last night. The machine gave us a bit of trouble the other night, and the scale needed to be reset. But last night! Arghhhhh!
Hubby was setting up and one of the bags (eleven pounds, remember?) slipped out of his hands and landed a bit hard on the scale. So the remainder of set-up was challenging, to say the least. We had to get tech support again. Nothing we did reset the scale. And the Doom screen popped up, this time because the internal pumps were out of sync somehow. Forturnately, we were able to get over it, get it all reset, and make the Red Screen go away.
I suspect that we may be having trouble with the scale because of the cat. Sometimes we don't have time to fully disassemble everything from the machine, and a nearly empty bag sits on the scale (which is also a heater) until we get the chance to pull it off - sometimes toward the end of the day. I'm guessing that the cat probably finds this a cozy place to hang out, and although she's very small for a cat, leaping from the floor to the heater/scale may lead to a pretty solid landing.
I'd keep the cat out of the room, except that Babygirl wants her door open when she sleeps. And since this kitty is a hider, once she's in, I can't find her, nor can I find her anywhere else to prove she isn't in there!
So we just have to keep resetting the scale as needed. And go back to meditation when the situation allows.
DeeDee
Hubby was setting up and one of the bags (eleven pounds, remember?) slipped out of his hands and landed a bit hard on the scale. So the remainder of set-up was challenging, to say the least. We had to get tech support again. Nothing we did reset the scale. And the Doom screen popped up, this time because the internal pumps were out of sync somehow. Forturnately, we were able to get over it, get it all reset, and make the Red Screen go away.
I suspect that we may be having trouble with the scale because of the cat. Sometimes we don't have time to fully disassemble everything from the machine, and a nearly empty bag sits on the scale (which is also a heater) until we get the chance to pull it off - sometimes toward the end of the day. I'm guessing that the cat probably finds this a cozy place to hang out, and although she's very small for a cat, leaping from the floor to the heater/scale may lead to a pretty solid landing.
I'd keep the cat out of the room, except that Babygirl wants her door open when she sleeps. And since this kitty is a hider, once she's in, I can't find her, nor can I find her anywhere else to prove she isn't in there!
So we just have to keep resetting the scale as needed. And go back to meditation when the situation allows.
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
Sunday, November 27, 2011
"Spare Quiet Moments........"
In my last post I mentioned using my "spare quiet moments" to focus on the season. And although I didn't specifically mention it, the last post's title implies that this is for stress management purposes. Let me clarify that some.
Spiritual focus is not a "stress management technique." It is, and always has been, simply a part of my day-to-day living. Take that away, and I do get stressed. So being for so long in a situation where contemplative thinking is about as likely as going to the bathroom alone when you have a two toddlers, I have been stressed. Well, more stressed. So I went on a hunt for those quiet spare moments, and was amazed at where quite a bunch of them were hanging out - right in front of the dialysis machine.
You see, when someone is setting up the machine, the door is closed so no one comes in without a mask on to contaminate the process. And while parts of the procedure are delicate and require concentration, there's a lot of this:
Push a button. The screen comes on eventually and says, "Welcome to your treatment."
The machine contemplates its navel for five minutes, during which time you pull out a 22 pound box of dialysis fluid, pick off the tape (NO SHARP OBJECTS per the dialysis team), and grab a wrapped cassette, pushing the odd button on the machine when it asks if the preset settings are okay ("Reject") and asking you to confirm the custom settings ("Okay!). There is also time during this to fit in a full two minute hand wash, mask in place.
Two minutes is a long time to stand in front of a mirror washing your hands. "Happy Birthday" takes thirty seconds. The Alphabet song, about a minute. But here is one of those lovely places where I can be contemplative. The average Christmas carol far exceeds two minutes. And I love to sing.
Once back in the room, the cassette is inserted, and you have to pull those eleven pound bags out, carefully ripping the plastic covering from each to expose the connection tubes. The next screen advises: "Connect bags to supply tubes and set up drain tube." It doesn't take long, and then the machine goes into its own contemplation, all the while making various noises. My favorite is the one that sounds like the doorbell on The Munsters.
The machine counts available fluid bags, flushes all the lines, and primes the patient tube, all with anywhere from one to three minute segments where I sit and wait. And wait. And wait. The entire process takes about 15 minutes, and I need to be truly focused only on the machine for about 2 of those. And this is a nightly event, done solo, without even Babygirl in the room. We go through a similar process in the morning, but it takes far less time and is far less complex (and the final screen is annoying: "Have a nice day!").
So there I have it - a built-in no-escape time when I can take the hamster off the wheel in my brain, slow down, and remember why I'm here, and what all this is for.
I'll take it
DeeDee
Spiritual focus is not a "stress management technique." It is, and always has been, simply a part of my day-to-day living. Take that away, and I do get stressed. So being for so long in a situation where contemplative thinking is about as likely as going to the bathroom alone when you have a two toddlers, I have been stressed. Well, more stressed. So I went on a hunt for those quiet spare moments, and was amazed at where quite a bunch of them were hanging out - right in front of the dialysis machine.
You see, when someone is setting up the machine, the door is closed so no one comes in without a mask on to contaminate the process. And while parts of the procedure are delicate and require concentration, there's a lot of this:
Push a button. The screen comes on eventually and says, "Welcome to your treatment."
The machine contemplates its navel for five minutes, during which time you pull out a 22 pound box of dialysis fluid, pick off the tape (NO SHARP OBJECTS per the dialysis team), and grab a wrapped cassette, pushing the odd button on the machine when it asks if the preset settings are okay ("Reject") and asking you to confirm the custom settings ("Okay!). There is also time during this to fit in a full two minute hand wash, mask in place.
Two minutes is a long time to stand in front of a mirror washing your hands. "Happy Birthday" takes thirty seconds. The Alphabet song, about a minute. But here is one of those lovely places where I can be contemplative. The average Christmas carol far exceeds two minutes. And I love to sing.
Once back in the room, the cassette is inserted, and you have to pull those eleven pound bags out, carefully ripping the plastic covering from each to expose the connection tubes. The next screen advises: "Connect bags to supply tubes and set up drain tube." It doesn't take long, and then the machine goes into its own contemplation, all the while making various noises. My favorite is the one that sounds like the doorbell on The Munsters.
The machine counts available fluid bags, flushes all the lines, and primes the patient tube, all with anywhere from one to three minute segments where I sit and wait. And wait. And wait. The entire process takes about 15 minutes, and I need to be truly focused only on the machine for about 2 of those. And this is a nightly event, done solo, without even Babygirl in the room. We go through a similar process in the morning, but it takes far less time and is far less complex (and the final screen is annoying: "Have a nice day!").
So there I have it - a built-in no-escape time when I can take the hamster off the wheel in my brain, slow down, and remember why I'm here, and what all this is for.
I'll take it
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
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