Taking Up An Old Battle......

When I was 48, my Babygirl was 6, and I was 100 lbs overweight. Since my mom had her first stroke at 58, I suddenly awoke to the idea that I had only TEN years to make a lasting change.

I did not 'go on a diet.' I radically changed my lifestyle. I lost 60 lbs, and went from being winded going up 2 flights of stairs to being able to ski for 6 hours with Babygirl (not that we got to do that THIS year!). I walk a mile a day at least, and go to Curves three days a week.  I eat five to seven servings of fruits and veggies each day.

Or I DID.  Then came kidney failure.  Stress.  Mandatory sedentariness (okay, no such word, but you get the idea).  We ate on the run a lot, and although I have figured out ways to minimize the caloric impact of fast food, it still adds up when it's a repetitive behavior.  I had trouble fitting the walk and work-outs in around the dialysis machine hookup times, and by the time we got the transplant, I had largely stopped doing either.

And as I said, the food at Children's Hospital is really good.  They had healthy options such as veggies and fruit readily available.  But they had some pretty good Philly Cheese Steak subs, and decent pizza.  I stayed clear of the pasta, burgers and big deli sandwiches.  I ate fruit and salads, and had a spinach omelet for breakfast and NOT the chocolate chip pancakes. I took all my pills daily.

Starting two days after Babygirl's transplant, I began regularly climbing the stairs in the CHOP atrium.  There are 48 steps to the third floor, and I did them three to five times daily.

But there was one other problem.  I forgot to pack one of my medications.  Since it's injectable, it lives in the fridge.  And it's got one major side effect - it decreases my appetite.  I found myself TWENTY pounds heavier by the middle of February than I was in mid-April, before Babygirl's diagnosis.

I knew before we left for CHOP that I was in trouble.  My 'skinny' jeans hadn't fit for a while already, and some of my work pants were getting tight.  By the time I came home I could barely button my 'comfy' jeans, and had only three pairs of pants that fit for work (thank goodness - my skirts are a bit more forgiving LOL).

For the first few weeks since the transplant we have been getting into the medication routine, since the meds HAVE to be taken every 12 hours without fail.  And gradually, I have been getting back on track with the meds and healthy eating.  I began walking daily again about ten days ago.  The dog is looking slimmer, and I've lost ten pounds.  My 'comfy' jeans are getting comfy again, and I'll see when I get home from this trip to Philly if any more of my work pants fit again.

Because the bottom line remains.  I'm an OLD mom for Babygirl.  Most women raising 12-year-olds are in their thirties, and I'll be 54 this month. She's chronically ill and is going to need support for a long time.  And she's going to be dependent on ME for health insurance.  If I work until she's 26 (beyond which time she won't be covered by my insurance), I'll be 68 when I can retire (holy CRAP that's only 14 years from now!!).  Medicare will cover her for the next three years, since she had the transplant.  If she goes on dialysis again, they'll cover her again, with a three month delay (more in another post on the ramifications of THAT).

Nothing I can do will guarantee longevity. Nothing I can do will guarantee that I will be able to work even if I'm alive.  But I will say this, again:  As much as it rests on me, I will do all I can to be here for Babygirl as long as I can.  I'll get my mammograms, my colonoscopies, my cholesterol and blood sugar tests.  I'll maintain the healthiest lifestyle I can without making myself and all those around me insane.  I'll do what my doctor tells me to do (and on my last visit his command was, "I want to see that extra weight GONE by the time you come back in three months!").

It's easier for me to take care of myself now that Babygirl looks so well.  I know I'm sleeping better without the dialysis machine alarms.  She'll be returning to school, God willing, in a little more than a week.  I need to take the time to breathe.

DeeDee

Waiting......

We received a call about three hours ago.  There may be a kidney for Babygirl.  She's third in line this time, and they won't be able to let us know until after midnight. 

Six hours is a long wait.  I have actually packed, for myself and for her. I went and topped off the gas tank, and got some cash in case Curlygirl has an emergency when (if) we are gone. I went to Dunkin Donuts and cashed in the free coupons we got for donating blood, since they'll expire while (if!) we are gone.  Hubby is unable to consider packing.  This time I am calm, and he is emotional. 

Babygirl and I are scheduled to go to the local dialysis center tomorrow morning.  My mom has a doctor's appointment tomorrow afternoon, and as she spent the week in the hospital it's imperative that she go. I took the rest of the week off so I could work on painting in the house. Hubby needs to work on the kitchen.

These waits are pauses.  Like the dead silence that can suddenly descend on a room full of people, inexplicable and unnerving, these phone calls put a halt to every other purpose we might have. We have to carry on the routine, setting up the dialysis machine as if she will need to stay on it all night, not entirely sure how we'll shut it off if we need to leave. 

Should we go to bed? Stay up? Pack a lunch??? There is no limit to the absolutely ridiculous things that run through my mind.  No end of ways to avoid thinking about the dangers of the surgery, the suffering she'll go through, the grief of a family losing a loved one, the desperation of the people who are both ahead of and behind us on the list.

I met a man last week whose fourteen-year-old son died last month of Chronic Kidney Disease.  His little boy didn't survive dialysis, didn't survive long enough to complete his Make-A-Wish, or get his new kidney.  On my way home later that day I had to pull off the road and cry.  And go back to begging, "Oh please God, not us!  Not that!"  And the gentle touch on my shoulder, and the Voice saying, "You are praying for the wrong person." 

Of course I was.  I still have my Babygirl, the healthiest sick kid you'll ever see.  And that father - he has a huge empty hole where his boy once lived. 

I think, perhaps, that that awareness makes me a little less anxious about this 'maybe' kidney.  As much as I want it to be ours, I want it to go to a kid like his son, one who truly can't wait.  Not that I want Babygirl to wait until she is desperately ill, but I know she can still wait a while and be safe. 

And so can I.

DeeDee

Week Forty - Miracles Happen........

When we adopted our daughter from Guatemala ten years ago, we thought that the years of paperwork were behind us.  If anyone ever told us that we needed to do more, I can't recall.  I vaguely recall someone suggesting that re-adopting her in the United States would be a good idea because it would be easier to get copies of her birth certificate.  But I never got around to doing it, and never really thought it mattered at all.

When you adopt a child, you get a whole new birth certificate.  That certificate implies that you have actually given birth to that child.  So Babygirl's current birth certificate lists me as her mother, just as her original birth certificate listed her birth mother.  It also implies that I gave birth to her in Guatemala twenty-three months BEFORE I actually ever met her.  She was granted a visa to come into the US and given a Green Card (which, by the way, is not green). 

When Babygirl was diagnosed with kidney failure, we were told that once she either started dialysis or received a transplant she would qualify for Medicare.  Yes, that is ordinarily for the elderly, and for disabled adults.  But it has one significant exception in that everyone on dialysis qualifies for coverage.  Well, almost everyone.  Illegal immigrants are, rightly enough, excluded.

And it turns out that Babygirl, and her sister Curlygirl, are not US citizens.  And it turns out that since their Green Cards and Visas have expired, they are not exactly legal either.  The fact that I legally adopted them in another country is irrelevant.  I was supposed to file some paperwork with some agency somewhere that would have made them citizens.  With Curlygirl, it really is a matter of simple paperwork because of the type of adoption we did.  With Babygirl, we must do a full re-adoption in the US to make her a citizen.  And until we do, she absolutely cannot get Medicare.  And until we get Medicare, we owe $75 per DAY for dialysis, from August twenty-second until now.  That's 160 days so far.  That's $12,000 and rising daily. 

When we found this out, we started the adoption process.  And since I adopted her when I was single, Hubby is going to adopt her too, and legally become the Daddy he's been since he went with me to Guatemala to bring her home.  This is not a short process, and we are running against a ticking clock of limited appeals to Social Security for extended time.  We're on the final countdown, and less than thirty days to go to produce a US birth certificate (one that implies, I assume, that I gave birth to her HERE).  And we don't yet have a court date.  If we don't succeed in the allotted time, I have to re-apply and start a new clock running, and we will have to pay all bills due to that date, around $15,000.  If we DO succeed, Medicare will cover all dialysis-related bills going back to August twenty-second, and we will owe nothing.  Our anxiety has been steadily mounting.

So I am at a loss to explain why, when I opened the mail on Monday, it contained a brand new Medicare card for Babygirl.  I'm not calling anybody to find out why they sent it.  I'm just faxing a copy to everybody we owe medical bills to, and waiting to see what happens next, and proceeding with the adoption as if the urgency remains in case they really didn't mean it. 

I admit I cry easily these days.  But I was too stunned to cry over that card.  At least at first. 

DeeDee

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

Time to Update Things......

We are still looking for a  kidney.  We'd be thrilled to find a volunteer living donor!  Babygirl is blood type O positive, so she can get an O positive OR O negative kidney.  You can find out your blood type by donating blood.  If you're too squeamish to do that you are likely not good donor material.  If you are too small to do that, your doctor could do it, or you could ask me to mail you the donor forms and our hospital will.

What criteria do a living donor need to meet?  Under 35, preferably. Absolutely no personal history of High Blood Pressure or Diabetes, or any other disease that puts the donor's kidney function at risk.  Body Mass Index under 30. 

Babygirl is of Native American/Hispanic origin, but anybody of any race could be a match.  We live in the northeast, so proximity is helpful but  not absolutely necessary. 

If you can't donate, then feel free to post the link to this blog on your facebook page.  Feel free to put my baby on your church prayer list.  If you'd like, I'd be happy to mail posters with Babygirls adorable face on them anywhere anyone would be willing to put them. 

Thank all and any for your support.

DeeDee

New Year's Resolutions.........

I don't have any.  Well, none that are really new.  But as last year wound down I found myself wondering what I could do this year that would make things simpler, kinder, gentler.  So here are a few thoughts:

My mom is in failing health. She frequently forgets what we are doing, where we are going, or what the point of what we are doing is.  I have already, for the most part, stopped trying to keep her up to speed.  If she asks a question for the third time I try to answer it the same way I did the first two times - as if it were still the first.  Sometimes she realizes that she has asked before and sometimes she doesn't, but it's less stressful for her if I stay cooler.

We have already said "No" to anyone who needs our help with anything big this year.  No one else can move in, and once out, no one can come back.  It's time to circle the wagons around Babygirl and let her have as much of our attention as it is healthy to give her.

I am amazed by how little time it took to become accustomed to letting my head slide into meditation at the dialysis machine.  I plan to continue doing it!  I've also noticed that it is easier to take a moment and send out a prayer for someone else, since I'm developing a habit of it (and about danged time too LOL!).

I am doing better at letting myself rest, and not beating myself up too much if I don't feel like putting together a three course meal every night. Right now, my bedroom, Babygirl's room, the living room and both baths are clean. The laundry is done.  I consider that to be as much of an accomplishment as painting the Mona Lisa.  And it probably took nearly the same amount of time. (Too bad it isn't as permanent!)

I am not jumping as high with every phone call.  And I hope that when "the call" finally comes that I'll be able to just go with it, keeping my own cool so my baby won't get anxious.

Habits I still need to form?  I need to keep the gas tank full.  I'm still not really good at this.  And every once in a while I realize I don't have my cell phone on me.  I need to keep remembering that it's okay to ask for help.  Often.

And I need to remember to give thanks for all we have. Reading this blog http://jamescamdensikes.blogspot.com/ has shown me just how much I do have.  If you have a spare moment, pray for Jamsies' parents.

So thanks, God.  For home, family, life and food.  For funny, homely moments that hang in the heart and soul long after they pass. For work, play, and sleep.  For a hubby who knows that a box of Malted Milk Balls in my stocking makes my Christmas.

Happy New Year!  God bless us all!

DeeDee

Turning the corner.....

A minor update for those who have been praying for Babygirl this week:

She is eating a little, and drinking well.  She has been on her feet a couple of times for an hour or two at a time.  She lost all the weight she regained, but seems to have stabilized yesterday and today.  This morning she is sleeping in, as she did yesterday. There was no significant fever yesterday, and the antibiotic seems to be making he throat feel better.

So she will have a Merry Christmas.  And therefore, so will I. 

And I will keep the families who got new kidneys this week in my prayers, and the family of the donor; one group rejoicing but suffering through surgical recovery, one group mourning.

We have much to be thankful for, indeed.

Remember this Christmas to not take your family, your health, and your life for granted.

And sign your organ donor cards.

DeeDee

"This is the LONGEST......."

So Babygirl's been acutely ill since Monday.  By Tuesday she had a very sore throat and a fever of 102.6 degrees.  The family doc saw her Monday, did a rapid strep and sent her home.  Tuesday got a full throat culture and peritoneal dialysate culture, both negative.  Fever ongoing through Wednesday, with Babygirl looking increasingly ill.  Poor thing - her throat hurt so bad she didn't really want to drink, and eating made her nauseated.

No fever this morning, but tears because the throat hurts SO bad, so we just came back from the family doc.  We went to get blood work after he spoke with nephrology.  I was concerned about possible mono, but it turns out they already tested her and she's immune, but we are rechecking that.  Meanwhile, this is day number four of no school, and Christmas vacation starts tomorrow.

Overall, it's been a bit draining.  I have taken off two afternoons, which is something I really can't afford to do too much of.

But then, there is Babygirl's perspective.  "Mom, you know, this is the LONGEST I have ever been sick!" Well, I guess not counting the Swine Flu for five days last year, and the fact that you are IN NEED OF A KIDNEY TRANSPLANT!!!

Seriously.  I had to laugh, later, privately.  The kid is sick enough every day to qualify for Make-A-Wish!  And somehow, she doesn't see it that way.

I'm proud of her endurance.  And I'm kinda proud of us.  I think that if she doesn't perceive herself as "sick" all of the time, we have acheived something great for her - a semblance of normal life.

DeeDee

Week Thirty-five - What Happens If She's Sick When........

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

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

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

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

"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

Week Thirty - Conflicting Obligations......

So far I think I've done pretty well juggling all the things I need to juggle.  I had to drop out of a few things (directing church choir hurt the most) and say no to a few more.  I still manage to get to Bible study a couple of times a month at least, and am making a concerted effort to get back on board with my exercise program.  And I must say that the family has been, generally, uncomplaining. But after half a year of hearing about what Babygirl needs, it must be getting tiring.  And this morning it occurred to me that I may end up running into a major conflict of interest soon. 

My eighteen year old, my Curlygirl, is having a baby.  I think it's the coolest thing in the world (although she disagrees!) that she is due on February 29th.  She has been doing okay with the pregnancy, but her asthma is kicking her hard.  And she's tiny, barely five feet tall, and very narrow-hipped, so I've been thinking that a C-section may be in the works for her.  And I plan on being there for her no matter what. 

Except.....

What if THAT's the week we get a kidney and are trapped in a hospital four hours away?  I mean, I know I shouldn't borrow trouble.  But I also have a sinking feeling that my life is just refusing to go the way any normal life should go. Yes, I know the wait is three to five years, but we've already had TWO offers, so it's not impossible to imagine that we won't wait that long. 

I think I need to talk to both of them about it.  This one "what if" probably needs to be covered in advance, however unlikely it may be.  But how do you choose between two such enormous needs?  How do you decide whose disaster you would rather be present for, should one occur? How do you explore the feelings of a child who has every reason to fear another surgery, and compare them to those of a young adult who has already had far too much experience with the sensation of maternal abandonment?

In a way, I think even I am tired of always putting Babygirl first.  Curlygirl needs me just as much, and maybe more for this one time in her life.  Ugh.

DeeDee

Raising a Well-rounded Child......

One of the supreme challenges of raising a very ill child is making sure that you let them know that although they are "special," they are still "normal."  I really don't want to end up with a self-centered monster who thinks we should drop everything everytime she "needs" us.  Balancing that against my instinctive desire to protect her from all possible harm is difficult for me.

So Babygirl has chores.  Empty the dishwasher daily, or more as  needed.  Clean one bathroom, and do it well. Clean her room weekly.  Believe it or not, that last is a totally new demand of mine.  I've never cared if the kids' rooms were messy - that's what doors are for.   But since Babygirl is going to need to live in a VERY clean environment after the transplant I figured we'd start keeping it up when she moved to the new room.

But this weekend the church youth group had a special project.  They were joining together with other youth to do some flood relief a couple of hours away. 

You see, there is almost no area in this state from here east that didn't suffer terribly during the recent tropical storms.  Towns flooded, roads and bridges still out, thousands still homeless, and farms literally washed off the map.  And any field flooded with contaminated water (which, near as I can tell, was ALL of it!) can't be harvested.

Now.  Let's think this through.  Sick kid.  Contaminated water.  Good idea?  And to do this she has to miss a night of dialysis, and switch to a day run.  But she wants to go.  I'm sure it's not that she has a burning desire, at the age of twelve, to help the helpless,  I'm sure it's that she wants to spend time with her friends.  But I also WANT her to go, to see more personally the devastation of peoples' lives and to develop a personal desire to help.  I want her to have that balance. 

If she had already had the transplant this would actually be out of the question because of the antirejection drugs.  And unlike each of my older children, I will likely be unable to take her on a mission trip with the Appalachia Service Project because by the time she's old enough, she will (pray God) have had that transplant, and it will be to dangerous for her to go.  But right now her immune system is fine.  And so.....she went.  She spent her day helping to clean a cornfield, and is suitably impressed by the size of the project.  And I am hoping that it will make her realize that as tough as her life is, other people have some tough times also.

As I've said before, if we don't throw her a pity party she won't know she needs one.  Turns out it's easier said than done, but I do my best to pull off the cotton wool and let her go.

DeeDee

Down time......

After the most insane 12 weeks of my life, I suddenly find myself with no one to take care of!  Hubby and nephew are of for a week of mission work.  BabyGirl's at camp.  The only one left here with me is my 17 year old, and all she does is work and sleep!

I was supposed to go on the mission trip.  We serve the Appalachia Service Project, doing emergency repairs for homeowners. But my 19 year old hasn't had her baby yet - stubborn little Boo!  She's due the 23rd and apparently intends to stay where she is until then!

So I have a week off.  No work, which is a blessing.  My work is demanding, and I have had brain function issues since my illness in November that make it even harder.  The break has allowed me some breathing room.  My calendar since April has been such a bewildering maze of doctors appointments, medication schedules, shot reminders, and negotiations with insurance that I simply don't know what to do with a blank week!

So I am painting.  No, nothing artistic.  Bedrooms.  We are shifting things around to get ready, financially and emotionally, for the upcoming strain of surgeries and dialysis. And believe it or not, this type of mindless labor has a very Zen appeal for me.  I have finally been able to let all the hamsters off the wheels in my head, exhaust myself with a good day's work, and sleep. Really, really sleep. And finally, to pray.

Oh, not like I haven't been praying.  Back in December, when I'd been sick for about 3 weeks and no one knew what was goint on, our church had a little tree.  You were supposed to write a prayer, stick it in a clear glass ornament, and hang it up.  My prayer just said, "PLEASE".  As in, "I'm begging you..." And nearly every prayer since then has been a harried, concentrated plea for something I need right now - the car to run, the traffic to clear so we can get "there" on time, for Matt to get better NOW because I need him, get me back to work before I run out of sick time....

But I haven't had time (or taken it) to listen.  To let myself know that I am being carried (Footprints In The Sand). There is always a part of me that is aware that God is with me, but I confess I rarely "hear" His voice the way many claim to.  But yesterday, there was conversation.

"She's officially on the list, God.  Please! Do the miracle and get her matched!  I'd sell my soul... No!  Wait!  YOU own my soul, but you know what I mean. I'd do anything so she would't have to suffer this!"

"She is not the only child, nor are you the only mother, who is walking this road and praying this prayer.  Would you want another child to die waiting so yours could be healed?"

Ouch. Okay, so when I say "anything" is that what I mean? SIgh. No.  Sincerely, no.  So, okay, keep carrying me, God.  And, well, then, how 'bout those coping skills?  Can you give me some of them?

Thanks, God.  Amen.

DeeDee

The Living Donor Conundrum....

My kid needs a kidney.  And she needs it sooner rather than later.  Eighteen people die each day waiting for organ transplants.  There are truly tens of thousands of  people waiting, and fewer than 10% of them get the organs they need in any given year.

Dialysis is not a cure for kidney disease, it is a delaying tactic.  The life expectancy of a patient on dialysis is significantly lower than that of those who receive transplants, even taking into account surgical disasters and early transplant failures.

The average wait time for a kidney from a cadaver is 3-5 years. Years. All those years on dialysis.  So she will turn 12. Then 13.  Then 14.  Maybe 15 or 16? before she gets that kidney.

Unless we find a matching living donor.

Usually this is less of a challenge for children than adults, because generally, families treasure their chidren and line up quickly for testing - Devil take the risk!  As you may have gathered, it's not that we don't treasure our baby - we all lined up pretty quick too!  It's that we aren't actually related to her. None of us even pass the preliminary screening.

We are fortunate, blessed beyond all imagination, to belong to a loving and supportive community church.  I have been humbled, awed, and brought to tears by the number of people who have come to us and asked what they need to do to give her a kidney.  Bless them, bless them all! But the majority were either the wrong blood type, or too old (over 60), or too ill (high blood pressure and diabetes takes you out of the running automatically).

We have at least 6 who make the preliminary cut.  Our living donor coordinator was truly impressed by this number.

But here's the thing, emotionally.  Sometimes being a doc interferes with my ability to set priorities in the way another parent might.  Removing a kidney is not a little deal.  It's painful.  It has significant risks, both short- and long-term. And I'm not fond of asking people to take huge risks on my behalf.

And, to whom, honestly, would I be willing to give one of MY kidneys? Some of that is simple.  My kids. My husband.  My brothers, sisters-in-law, neices and nephews.  But....  If I saw a random poster of a kid hanging in my local grocery store, would I call? Would I, as a mom of a young child, offer my spare kidney to someone else's child, knowing the risks of the surgery? I feel tremendously guilty.  WHY didn't I give away my spare kidney before I developed high blood pressure?  Why didn't I think of it?  I'm on the bone marrow donor list - why not a kidney?

Just today I ran into a total stranger who is BabyGirl's blood type.  She says she is on a living donor list but has never been contacted.  I gave her our donor coordinator's card.  Then I went to my car and cried. 

I have never considered myself to be a coward.  And I don't think, in the ordinary scheme of things, that I am selfish.  But I am a SLACKER beside the courage and selflessness of these people.

DeeDee

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

Week Nine - More Labs.......

In the aftermath of the ER visit, they wanted us to go for more labs.  Despite the increase in fluids, her kidney failure did not improve.

Maybe it's time to talk about numbers.  There are basically 3 blood kidney function tests.

1) Creatinine (Cr).  Normal value in kids would be 1.0 or less.  It's a indirect reflexion of muscle mass and muscle turnover, and the kidneys eliminate waste from that balance.  It rises exponentially as kidney function worsens - for example, a rise from 1 to 2 represents a loss of nearly half of your kidney function.  From 2 to 4, another half (leaving 25%), and so on.  My daughter's first Cr was 4.7, It is now 6.2.

2) Blood Urea Nitrogen (BUN).  Normal varies based on circumstances, but if  Cr is normal, BUN should be around 10. It usually rises in proportion to the Cr, so a patient iin chronic kidney failure  will have a  BUN roughly 10 times the Cr.  A dehydrated patient will have a much higher BUN/Cr ratio. 

3) Glomerular Filtration Rate (GFR).  GFR is a reflection of the speed at which glomeruli (the kidney's tiny filters) can clear waste from the blood) . This is a calculated number based on height, weight, and age. Labs automatically calculate them for adults, but in kids you need a GFR calulator (or a formula).  My daughter's docs do not talk about her GFR.  At first I wondered why, but then I went to a GFR calcualation site. I plugged in her numbers and discovered that her GFR to start with was 13.  Now it's 6.  Normal is greater than 90.  So at this point the number is irrelevant.  Her kidney function is nearly as bad as it can get either way.

Renal failure is staged. with Stage 1 being a GFR just below 60. Stage 5 qualifies you for transplant/dialysis, with a GFR less than 15.  Usually they begin to prep for dialysis early in Stage 4, because it takes time to ready the body for that process.  She is deep into stage 5, and we do not have access for dialysis., AND we aren't on the transplant list yet.

We are running out of time.

DeeDee