Monday, October 31, 2011

Week Twenty-eight.......Happy Halloween!

The thing about the kidney failure diet that bugs my baby the most is not being able to eat chocolate.  Since she was tiny child, it's been her favorite thing.  She was very malnourished when we got her, and she didn't much care for milk, so I actually added chocolate syrup to get it into her (Hey!  I know it's bad parenting, but sometimes you just have to do what you have to do!).  She was the child who did  the happy dance outside the oven for the entire 28 minutes the brownies baked.

So I was thinking that Halloween was going to be one ugly holiday for her.  She isn't really a big candy fan.  Skittles and Gummy Bears hold no real appeal for her.  Starburst?  Okay, I guess.  Smarties?  You can have those, mom.  But Reese's Peanut Butter Cups?  Dang - they are the BEST!  And the low-phosphorus diet says "no" to both peanuts and chocolate.

So I was VERY relieved when the dialysis team laughingly admitted that every child shows crappy results on their phosporus levels on the first Wednesday of  November.  They told Babygirl that she could have some chocolate but that she would need to take extra phosphate binders (the prenatal vitamin-sized ones!).  She was very happy, and I mean VERY happy to do that tonight.

The look on her face while she fully appreciated a peanut butter cup was worth a fortune.


Sunday, October 30, 2011

The Phone Call.......

This morning around ten we got a phone call from the transplant coordinator.

"We may have a kidney that matches.  Is Babygirl okay?

I puzzle through that for a couple of seconds and realize she is asking about her immediate health.  She's fine, praise be - healthiest sick kid you ever saw!

"Well, then, please stay near the phone.  We are running crossmatching and it will take about 3 hours.  I'm not saying she'll get the kidney - there are people ahead of her on the list, but the match looks really good."


We decide to tell Babygirl nothing until we are prepared to stick her in a car.

Hubby cries.  I call the prayer chain.  We pack a suitcase.  I cry.  I shoot off a prayer for the family of the donor. And we do our very best to figure out what to do next.  I spent some time talking to the oldest daughter who is still at home.  I'd have to leave money to run the house, maybe a signed blank check or two to keep the construction going.  I chat with the contractor, who despite the fact that it is Saturday is working like a maniac in my house.  Thank God the new windows are all in already.

We sit down and do paperwork.  One set is for estate planning, wills, trusts and so on.  It's a tough conversation on a low stress day, and even more interesting on a high stress one.  How do we provide for Babygirl if God forbid something happens to both of us?  We made half a dozen phone calls confirming what we already know:  Family will happily step in and do whatever it takes.  All of my girls are willing to graciously give up a portion of their inheritance to their sister for a trust fund to help her with her medical issues. 

After the eternity that this paperwork takes us, we check the time. After all, three to four hours MUST be nearly over already!


We still had a couple hours to kill.  Hubby went to start dinner.  I continued with household papers.  I do laundry. I sew. I watch, and watch, and watch the clock.  When it is more than an hour past the time they said they'd call, I slump.  I literally feel my blood pressure drop, and my ears ring.

Half an hour later they called back.  "Babygirl was a perfect match to the donor, but so were the people ahead of her, sorry."  There were two kidneys, and three people ahead of our baby.  The good news, I suppose, is that there is now only one child of her blood type ahead of her in line, and kidneys usually come in pairs.  And I suppose I should really be happy not to be driving three and a half hours in this unbelievable freak snowstorm. And babygirl will get to go trick-or-treating with her friends in the Halloween costume I finished making while I waited for that phone call.

Oh, drop dead, Pollyanna!  I'm going have a good cry anyway.


Monday, October 24, 2011

Week Twenty-seven......Time For Silliness

My baby has some interesting tastes for a child.  She is a "show junkie."  If it's playing at the old Art Deco theater, she is happy to go and see it.  It doesn't matter what it is, really - kids' musicals, Haendel's Messiah, Broadway shows, even (or perhaps especially) opera.

Now, I love music.  And my tastes range widely, from Eminem to Josh Groban (who, by the way, is Babygirl's favorite after Selena).  But opera has never really been my gig.  But that was, honestly, before I ever got to SEE an opera.  So although I'm still not a fan of listening to it, I do like to watch it, especially with my little one. 

But I have learned something important about opera.  It isn't just music, and pretty costumes.  It's libretto.  And the words to opera add up to some pretty incredibly heavy themes.  I made the mistake of taking my baby, then aged nine, to see Faust.  The libretto is flashed for the ignorant unilingual among us on a screen above the stage.  I am reading this to Babygirl as we go along.  But really, how does one explain a deal with the Devil that returns you to your youth so you can seduce an innocent maiden, get her pregnant, abandon her so she loses her mind and kills the baby?  And then she choses the death penalty rather than make a deal with Faust and the Devil to extend her freedom? 

So I've learned to check ahead.

Three weeks ago my mom called.  She wanted to go and see Madame Butterfly and take Babygirl with her.  Hmmmm.... "Mom, it's a pretty dark story.  Butterfly cuts her guts out in the last scene."  "No way!  I saw it when I was nine and there was no such thing!"  So she keeps bugging me about it and I finally said okay, but I just know this is going to be another Faust LOL. 

A week before the show my mom is going on about how excited she is to be seeing a Gilbert and Sullivan show.  Pardon?  Madame Butterfly is so NOT Gilbert and Sullivan!  Finally I figured out that mom was thinking of The Mikado, which, to give her some credit, does have Japanese characters also.  Needless to say, the suicide in the final scene of Madame Butterfly came as something of a shock to her.  Babygirl took in in stride (I HAD warned her) but argued that Butterfly  just "should have divorced that loser and gotten on with her life." 

Between the two of them I had all I could do to not simply laugh out loud in the middle of a death scene.

We are going to see Peter Pan tomorrow.  That should be easier to handle.


Thursday, October 20, 2011

Week Twenty-six......Half a Year

I started thinking about this post nearly three months ago, wondering where we'd be at this point.  After all, we had just found out then that there was no real hope of getting a kidney before dialysis became a necessity, that things were going from bad to worse, and finally getting the hang of the idea that we had a very sick little girl on our hands.

Compared to then, I feel almost normal.  People ask me how I'm doing and I'm able to respond, "Good."  It's true as far as it goes, but actually what I decided to do was to re-define "good" so that I could say it and be honest.  After all, even I've gotten a little bored with only having drama and sorrow to report.  I can't imagine how tired my friends and co-workers are of hearing it!

But the beauty of redefining what constitutes a good day is that you have more of them.  If we only wake up once or twice a night, it's a good day.  If we get to sleep through?  It's a GREAT day.  Sunshine?  Great day.  Rain without danger of flash floods?  Good day.  Grandbaby content to walk the dog with me?  Great day.  Grandbaby cranky but I get to hold her anyway?  Good day.  My brain functioning well on meds with no migraine?  Great day!  New contractor making progress on new bathroom?  GREAT day.

See?  It's simple.  And it will keep working as long as there really isn't any new drama.  But this six month mark still feels like a huge milestone.  When I look back, and think how we sort of expected to have a new kidney by now, and figured that a new kidney would actually solve all the problems, I see we've had to come a ways toward accepting our new reality.  And while I'm ready to carry on as long as needed to keep Babygirl's life as well-balanced as possible, I still have a huge problem with imagining that we will be in exactly this same position when we hit the one year mark.


Thursday, October 13, 2011

Week Twenty-five.....The Donor Search.......

We've had posters of Babygirl's cute little face distributed all over by anyone on the move from here to anywhere.  Periodically I get a random call from somewhere, asking about her and whether we still need a kidney.  Well, yes, as a matter of fact we do.....

I am still amazed by these calls.  Humbled.  Impressed.  The vast majority are from other moms, who see her face and her age and pray that someone somewhere would do for their child what I am asking them to do for mine.  In the past three weeks I have sent out five information packets, and sit with my fingers crossed.

But yesterday I got a call that was less than typical.  It was a man, to begin with.  Not that we haven't had male volunteers, but all of the men so far are people who know Babygirl personally.  This gentleman had heard of our daughter via a church newsletter (which, by the way, I had no idea was going out regularly in our district).  He told me that his dad had received a kidney from his aunt more than 30 years ago.  The kidney survived 25 years, and his dad a few years more.

I gave him the standard spiel:  under 50 years of age, good health, no diabetes or high blood pressure, and acceptable body mass index.  He met all but the last.  But his next sentence astonished me:  "Let me see if I am a match.  If the only problem they have with my donation is my size I PROMISE you I will do what it takes to lose the weight."

To me, this is breathtaking, absolutely stunning determination to pay back what someone else did to give him a father for his childhood and adulthood.  I understand what called to him about Babygirl's story, but he could have been tugged in this direction for any other child who needed him.  And somehow, he waited for us.


Sunday, October 9, 2011

Gratitude Redux.....

In Sunday School this morning the reading was about joy.  The end of Phillipians where Paul tells us to "be anxious for nothing" and pray.

Then our Sunday School teacher began to ask question about how all this fit into our lives.  One in particular stands out in my mind:  "What is the best thing that has happened to you this week?"

Well.  Honestly?  The best thing that happened was the dialysis machine breakdown.  We fussed and fiddlefarted around so much with that second machine that seeing it die was a honest-to-goodness relief.  And the new machine works better, hurts less, and is letting us SLEEP.  Yup, machine breakage wins as best moment of the week.

Who'd have thought?


Saturday, October 8, 2011

Dang Those Machines......

Our second dialysis machine expired two days ago.  Don't ask me to explain it.  It never worked as well as the first one and THAT one died after just three weeks of use. 

But remember the flood?  Apparently some wires got crossed with the ordering of our machine.  We got the one that the National Guard had to assist with the arrival of.  And then two days later we got another via UPS. 

I have to admit that it was probably less than totally honest to keep that extra machine.  But by the time it got there, the other machine was already acting hinky, so hubby and I just shrugged and said, "What the heck!" and kept it. Someone came to pick up our damaged machine, and a few days later someone else arrived looking for another one.  I actually explained to the FedEx guy what had happened, and why we wanted to keep the machine.  He just smiled and said, "I'll just tell them there was no pick up!"  LOL.

So two nights ago I had to call tech support yet again because our machine refused (as usual) to "see" our fluid bags.  We had just straightend that out, and I had hung up the phone, when the machine suddenly declared there was a balloon valve leaking, and advised me to shut down RIGHT NOW and call tech support.  The red screen of doom appeared (we've never seen that one before!) and tech support advised me to set up a gravity dialysis while they arranged shipment of a new machine. 

So I told them.  Well, actually......I just happen to have a spare.  I could tell by her response that this was not at all typical LOL.  She walked me through setting up the new machine, and all has been well since.

But honestly, if we go through one new machine every three weeks, how many are we going to use before we get that kidney???


Tuesday, October 4, 2011

Week Twenty-four - Smell the Roses.......

In the five years prior to Babygirl's kidney failure diagnosis, I made some changes in my life.  Something woke me up to the fact that I was destined to die young if I didn't.  I think the trigger was arriving at the age that was ten years younger than my mom was when she had her first stroke in her fifties.  And Babygirl was the impetus that kept that trigger firing.  I joined Curves and went three times a week faithfully.  I began eating five to seven servings of fruits and veggies daily. I went to my doctor, got my blood pressure and cholesterol under control and started medications to help me lose weight.  When I got stuck on the weight loss, I added a daily walk with my dog (to his eternal gratitude LOL).  And I kept it all up, even through the months of my illness last winter and spring.  I even walked the dog the morning of my cardiac catheterization (it was fine, thank you.). Overall I lost more than 65 pounds.

But now we are AFTER kidney failure.  I can go to Curves three times a week every other week, since I can't go on days when I am the nighttime dialysis manager.  I walk the dog, sometimes.  And I sometimes grab a piece of fruit on my way by the fruit bowl.  I know that in order to take care of her, I must take care of myself, but I often lack the internal resources to do both.  Fortunately, I have not regained any weight, but I can feel clothes tightening up as muscles loosen up. And I know that I'd have more energy if I did more exercise - it's a cycle that I learned when  I first started the changes. 

My dad has always told me to stop and smell the roses.  He knows that I am a high-pressure, energetic, driven, take-no-prisoners lunatic who really needs to slow down and breathe now and again.  But the problem with all of this is that there is no real enemy to fight, no dragon to slay, no prince to rescue.  I'm swinging swords at clouds and puddles, and there is no winning that battle.

So I am trying to let go of the "battle."  Walking.  My neighbors have beautiful gardens, and on the corner one block from here is one of the loveliest rosebushes ever.  And the roses, coincidentally, are at nose height.  They smell wonderful.  I took my two month old granddaughter with me for one of these walks, and had her smell them too.  I work on relaxing enough to laugh at the jokes, play the games, focus on the book I'm reading.  I try to remember that very little outside my work and Babygirl's dialysis machine is actually life or death.  Dinner?  Well, as I observed some time ago, cole slaw from KFC is actually a veggie.  Clean house?  Delegate to some of the flood refugees who inhabit my house.  Make the bed?  Are you kidding?  I didn't do THAT before the kidney failure!

I can't live my life on high alert.  Every cell phone call is NOT the transplant team.  My adrenal glands need a break.  God gave me a great life.  I have the privelege of relaxing and enjoying it when I can.