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

Babygirl has a new Ipod......

This mad me laugh, hard.















You have to appreciate the resourceful.

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

The Terrifying Ick.......

Saturday afternoon I was preparing to travel with Babygirl again, back to the tertiary center for a routine visit with the transplant team.  Traveling in the Northeast in January requires a bit of planning.  I wonder now what people did without Weather.com?  I looked at the weather, both at home and our destination.  Nothing looked too frightening.  But then I checked the halfway point, and holy cow!  Ice storm coming! 

I grew up near Buffalo, so snow doesn't frighten me.  But I have a VERY healthy respect for ice.  It's a very bad thing to land in an ice storm in a car.

So I looked at times, predictions and probabilities, and planned on traveling down on Saturday afternoon instead of Sunday.  I set up the CAPD (I tried a large Styrofoam cooler with the heating pad in it - it worked well, heating five bags without overheating) and started the first run, which starts by draining out the one hundred or so cc's of fluid left behind by last nights' machine treatment.

I can barely describe my utter horror when I saw what was draining into the bag.  It was thick, bloody fluid mixed with fine swirls of white - the first time the fluid has been anything except crystal clear.  I made my first freak-out call to the dialysis nurse. 

"Can you read through it?"  Huh?? Well, actually, no, not at all.  "You need to bring her up here right now."  Umm, well, actually, we were just about to start off in the opposite direction!  After some haggling we finally agreed to collect some of the fluid, take it to the local lab, and get back to her with the results.  In order to do this, I had to drop a liter of fluid in, let it incubate for an hour, and drain it out.  THAT bag was so nasty that some of it clotted in the bottom of the bag when it settled.  I drew out four syringes worth of fluid, labeled them and headed across the street to our local hospital.

I don't know how many of you are familiar with HIPPA laws, the rules protecting patient medical record privacy. They also govern what doctors are and are not allowed to do with lab tests.  Even though I'm a doctor, I'm not allowed to order tests for anyone except my own patients, and I'm not allowed to look up results on tests of family members.  Seriously, violating these rules could cost me my job.  So I called ahead, discovered that a friend was covering the ER and asked her to order the tests and accept the results.  Then I had a little trouble with the lab. 

I guess it just isn't every day that someone walks in with peritoneal dialysis fluid.  They had an issue with whether or not I was competent to produce such a specimen, and whether they could legitimately accept it.  So from the time I discovered the ick and the time the lab started working on it, more than an hour and a half had gone by.  And if those tests show infection, I have a ninety minute drive in the wrong direction ahead of me.  And the initial tests take nearly an hour.

Finally they called with results - no organisms seen.  White cell count low, and cell types arguing against bacterial infection. 

There is a relief so profound that it is actually nauseating. 

And the cause of the ick? Retrograde menstrual flow.  Yup - blood going up through the fallopian tubes instead of down.  So I have to wonder, are we preventing endometriosis here by flushing this stuff out?  And if blood can flow UP, why doesn't the dialysis fluid flow DOWN? 

When I speculated about this out loud, my nephew asked me to pass him the brain bleach.

We ended up traveling very early Sunday morning.  We missed the ice storm, but we got to watch the cars sliding around on the news after we got there.  The transplant team says she's doing well, see you in three months.  At least by then it will be spring.

And it will be almost exactly a year.

DeeDee

Fighting the Enemy........

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

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

We Are Killing the Planet........

Peritoneal dialysis must be one of the most waste-producing activities on the earth.  Each month, we receive an entire pallet loaded with supplies.  It takes a FORKLIFT to get this stuff off the truck, and it takes a good while to get it all off the pallet and into the house, since we cannot conveniently get the forklift itself past the steps to the front porch. 

This truck has to drive from wherever it loads (and I really have no idea where that is!) to us.  We aren't the only people in the area who get supplies from these folks, but we are the only ones in our zip code.  We won't even consider the energy it takes to make, package and ship the supplies to that point.  Each pallet is then loaded, and wrapped with plastic wrap to keep our supplies on our pallet and separate from everybody else's supplies. 

We use one box per day of dialysis fluid, at twenty-two pounds per box, so thirty of those with a few extra in case of emergencies.  They also supply a few boxes of fluid for CAPD (at twenty-six pounds per box).  We also use one cassette per night, and they come in boxes of twelve, so three per month.  We also use small caps to seal off her tube after dialysis.  They come in pretty small containers, less than a foot long, and light.  Then there might be extra boxes of drain bags as needed and a few other smallish things.  Each dialysis fluid box is VERY sturdy cardboard, about 24" x 14" x 8".  We can fit two dozen of them underneath her bed, and remember it is a top bunk bed, so it's a ways off the floor.

So.  The daily waste includes at least one cardboard box, sometimes as many as three.  Each bag of fluid comes in a thick plastic bag (a BEAST to tear off - just ask my nephew about his emasculating experience with one especially stubborn one).  Each cassette is also bagged, and each tube (there are seven per cassette) has a one inch plastic cap.  We have to clean everything with bleach, so add a weekly gallon bottle. Then there are the surgical masks we use. I have to wear one to set up, and Babygirl and I both have to wear them when we hook and unhook her from the machine. I do tend to wear mine more than once, and so does she, but one sneeze and you're DONE LOL.

The rules about what can be recycled are simple.  If it has been exposed to her body waste (cassette and tubing, face masks, and drainage bags and tubes if we use them) or has been filled with dialysis solution (the dialysate bags, even though they remain sterile), it cannot be recycled.  We can (and do) recycle the boxes and wrapping bags. 

I have two kitchen-sized trash cans in Babygirl's bedroom, both black to match the decor.  One is for recycling, and one for trash. I empty the trash can at least once a week, and the recycling, twice.  The boxes are broken down separately.

Then there are the other cleaning supplies.  Because of the coming transplant, we are to keep her room as clean as possible.  I have canisters of Clorox wipes everywhere, where once I would have used reusable rags. We have liquid antibacterial soap where once I would have used bar soap.  I have purchased a swiffer-style mop that has disposable antibacterial wet pads for our floors because traditional sponge mops breed germs. And let's not forget the trash bags.

One place I was safely able to get away with staying a bit green was by purchasing several dozen white washcloths to use for drying our hands after the two minute hand scrub.  We are supposed to use paper towels, but the center okay'd these as long as we bleach them.  Oh, add one extra load of laundry done with hot water.  Ah, yes, and let's mention the hit our electric bill takes from running the dialysis machine all night, or alternatively, a heating pad for CAPD.

It's one more small view of the fallout from this disease.

DeeDee

Week Thirty-eight - 'Possums and Poetry........

I've mentioned my Bible study group before.  We are a small group, around eight people on average.  We actually read a devotional article or poem each week and then discuss it.  Eventually.  We also share our joys and sorrows, and whatever story of our lives is in the front of our minds at the moment.  And we laugh.  And laugh.  And laugh some more.  What we share together is held in confidence, a sacred trust.  It is a safe place to go and feel loved and supported.  And did I mention that we laugh? Frequently any other group that is meeting in the church comes to tell us to close our door! 

Because of the confidential nature of our sharing I can't really tell you the story of the 'possum. Or why someone observing "Hey, it's better than a 'possum!" could bring us to tears of hysterical laughter.  I think that any family, small group, or pair of BFFs has a phrase like that - the one that makes everybody in the room crack up.

And the blessing of such a group is that there is always a shorthand.  I can walk in, look around, and see who has had a good or bad week.  As they can see in my face.  That sort of knowledge is a precious gift, rare as rubies and far more beautiful.

And what does this all have to do with Babygirl, you might ask?  Nothing.  Nothing except that I can rely on these women to help keep her mother sane.  I'm incredibly grateful for the love and support of these friends.  They rejoice when we have a good week, like this past one.  And they weep with me when I weep. They show up with food, and help decorate for baby showers, give up spare couches, and help each other understand the deeper meaning of the poems of our lives. 

I am richly blessed.

DeeDee

Sometimes a Day is Enough.......

The craziness of the holiday season is behind us.  The decorations are down.  The days are beginning to lengthen, and the cold will likely settle in soon. But our lives here don't really slow down.  We continue construction, dealing with dust and clutter.  Medical needs still take a lot of time and effort.  And taking time to just enjoy life instead of flying through it is still a challenge.

Yesterday was Curlygirl's baby shower.  She did a lot of the housework preparation, I did the planning for food and games.  But what made it the most fun of all was the support of family and friends.  A co-worker came early to help out, and cut and colored my hair in the process.  My sister-in-law, niece and nephew came about 10 AM and dove right into the fray as well. 

I have to brag about my niece and nephew.  They are kind, loving, funny.  Sarcastic, clever, playful.  And they walk into total chaos, pass out warm hugs, and look around and say, "What can I do to help?"  Every teenager on earth should be so kind!  There is real healing in the love of family, and in the support of friends. 

The shower was fun, food was plentiful, silly games well-received.  Curlygirl got some very nice gifts, including a carseat that I think will hold little Squeaker until he's about twenty.

And when the party was over, extra family was still there.  Dinner, drinks, laughter. Christmas gifts exchanged and appreciated.  And although they had to leave this morning, it seemed like a longer time.  Like a clear, joyous window, sunny and bright, after weeks of mostly cloudy weather.

I'd like to spend months with them.  But sometimes a day IS enough to renew your hope, your spirits, your energy.  I'll take it.

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