Saturday, June 30, 2012

A Simple Misunderstanding.....

The lovely folks at Make-A-Wish called me Wednesday evening.

"We've received a donation of tickets for a Dairy Fest and we were wondering if you'd like to take Babygirl?"

Dairy Fest?  Well, I'm wondering if I want to take her, too.  But hey, as my sister says, 'If it's free, it's me," so I told her that if no one else wanted them, we'd take them.  Apparently, nobody wanted to go to a Dairy Fest even if it was free, so she told me to expect the tickets in the mail.

So I did what anybody would do - I Googled the Dairy Fest.  Now this event was in a TINY town about 20 miles from anywhere, but I suprisingly got a hit.  Sadly, though, the website informed me that do to circumstances beyond their control, this years' event was cancelled.

Well.  Not like I was dying to go, but having grown up in the kind of small town where being voted "Dairy Princess" for the Memorial Day parade is a big deal, I thought it would have been a cool way to show Babygirl how I grew up.

The tickets arrived on Thursday.  Imagine my surprise when, instead of cows, the tickets sported Fairies, gnomes and trolls!

FaeryFest..... oh, right.

So we went, giving the excess tickets (there were six of them!) to a family with a lot of kids who were in line waiting.  We saw fairies, trolls, leprechauns.  Ogres, satyrs and fauns. Magicians and musicians.  Probably 90% of the guests were in some sort of costume, and the makeup on some of the staff was astounding. Despite 93 degree heat, we really had a good time.

But I must observe:  If you are 65ish, you are too old to wear a Tinkerbell costume, especially if that costume makes the people walking behind you pray sincerely that you are wearing underwear. 


P.S. Sadly, I ended up noting that she WAS wearing underwear.  But I doubt Tinkerbell would be caught dead in lace-trimmed granny panties.

Thursday, June 28, 2012

Affordable Health Care....

Since the beginning of this journey I have posted about our ongoing medical expenses.  Before Medicare kicked in we accrued nearly $12,000 in UNcovered medical expenses - deductibles, co-payments, exempted expenses.  And that didn't count non-medical expenses such as travel costs. 

But here's an appalling reality:  Before the passage of the Affordable Health Care Act, Babygirl was covered on my insurance only for as long as she remained a full-time student.  Since it's unlikely that she'll go to college, that means her coverage would end nine months after she turns 18.  THAT means she (we) would have to find some way to cover her medical care, which currently is exceeding $3000/month between prescriptions and doctor visits.  Her last hospital stay was just over $12,000 for four days including the biopsy, anaesthesia, room and board, and medication, and our private insurance is so far saying that it was not medically necessary (um.....she was rejecting her new kidney, but hey!) so they don't plan to pay.

Babygirl will be unable to afford her medications after she graduates.  We will not be able to afford to help her enough to prevent her from rejecting the kidney - remember, you only have to miss TWO DAYS worth of pills to start an irreversible rejection. 

So here's how it would go:  She'd miss pills.  The kidney would die.  She'd go back on dialysis at $170/day and Medicare would restart after three months ($15,500 for dialysis, more for the  meds you need to survive dialysis).  They'd put her on a transplant list, and she might get a new kidney, but Medicare only covers you for three years after transplant, and then the cycle would begin again.

She'd die, either as a consequence of dialysis, or lack of care, or rejection.  And she'd die young.

I know she doesn't have a normal life expectancy.  But I truly think that with decent health care she'll make it out of her twenties!  To me, "dying young" is sometime after fifty.  But without the Affordable Health Care Act, that will be out of the question. 


Wednesday, June 27, 2012

Week Sixty-two - Tired of the Phone Calls....

I was a day late taking Babygirl to get her blood work done.  I was supposed to take her Monday, but I absolutely forgot, as if it were never on my list to start with.  I actually remembered at three AM Tuesday, after I'd already let her go to her sister's to spend the night.  Three AM, you say?  Yeah, I've been seeing that time frequently lately.  I never imagined I'd have insomnia, but it hits a couple of times a week now.  It scares me, sometimes, because it can hit the night before I have to do the big run to Philadelphia.  So far I haven't been sleepy driving, but I keep to daytime drives as much as possible.

So at 6:30, after three hours of sleep, I went to Curlygirl's place and banged on the door, grabbed Babygirl and took her in for her blood work, getting mine at the same time.  The phlebotomist missed the first stick because the vein near her elbow has scarred shut.

So later yesterday they called with her results.  The neutrophil count is down but holding at a reasonable level. The creatinine is up to 1.0.  See you Monday.


I don't want to hear "down" in regards to neutrophils.  And I REALLY don't want to hear "up" about the kidney function.

And when I got home today there was a message from my doc about MY blood work, but they were already closed when I called.  He never calls, so something must be up with me, too.  Oh, yippee skippy.


Friday, June 22, 2012

Week Sixty-one - Guilty on All Five Counts....

Having never done jury duty before, I wasn't sure what to expect.  I had a rough idea of the process, but living it is much different.  I think that if people had any real idea what it was like, they wouldn't be so quick to want to get out of it.

It's an incredible responsibility.  In our case, we had to decide if a man (who had a full time job working with handicapped kids) was guilty of five different drug charges involving marijuana.

Putting aside the issue of whether or not we think marijuana should be legal, the jury has to decide based on current law.  I learned a few things: Don't loan your car to someone who travels back and forth to the big city a lot but won't tell you why. Marijuana wholesales for $1000/pound.  Don't take your water pills if you are on jury duty.  But the most important thing I learned is that you can possess AND sell a drug without ever touching it or paying for it yourself.

You have to think of a few different things.  "Possession" does not always, even in our day-to-day lives, indicate that we have something in our pocket.  I 'possess' my bed and the sheets on it even when I am out of town - it is mine.  According to the law I possess something if I "have dominion or control" over an object even if it is not on my person.  So if the police find a drug in my home even if I happen not to be there, it is under my 'dominion and control' and I possess it.

And according to the law, "sale" means 'to sell, exchange, give to or dispose of to another person, or to agree' to do any of those things.  So, if I arrange with a supplier to return my friend's (32 pounds!) of marijuana, I have both exercised dominion and control (possessed) and sold (agreed to dispose of to another person) that (did I say THIRTY-TWO pounds?) of marijuana. 

The law also says that if I am acting in concert with another person and THEY commit a crime, I am equally guilty of that crime.  So although it looked to me at the outset as if this guy was really not involved, he was.  And they proved it beyond a reasonable doubt to all twelve of us. 

We didn't decide lightly.  One of this guy's partners is in prison for a minimum of 3 years on one of  these charges.  We deliberated for over three hours, re-listening to the recorded phone calls and examining photos.  In the end, there was no other way to vote.  Five charges, five guilty verdicts.  And they polled the jury, asking each and every one of us to state that we agreed.

It was hard.  It was agonizing.  Watching this man's family and friends weep as the verdicts were read may stand as one of the worst moments of my life for a long time.  But we did right, despite what was for me at least an overwhelming desire to find him innocent of at least ONE thing. 

And that is what makes me sure it was right.  I had to struggle to overcome my natural inclination to always believe the good, expect the best, and forgive in the face of wrong.  I fought long and hard before coming to know for certain that I could not find him innocent. 

But if I were accused of a crime, I'd want someone like me on the jury.  In fact, I'd want the jury I was on.  I'd want the guy who stubbornly demanded to know the meaning of certain legal phrases to help determine if the crime actually occurred within the given time frame.  I'd want the young girl who never lost her cool and helped the rest of us keep in order.  I'd want the man who insisted we be sure that the crime actually occurred in the location where it was alleged to happen (and more doubt there than you'd think - the crime was largely committed on a cell phone!).  I'd want us - pastor, insurance adjuster, aerospace engineer, doctor, students, teachers, waiters and retail employees.  Yup.  My peers indeed.

If they call you, don't look for ways to get out of it.  Do it.  You'd want someone to do it for you.


Tuesday, June 19, 2012

The Jury Is In.....

....and I am on it.

A few weeks before Babygirl got her new kidney, I received a summons for jury duty.  I have no objection to serving - in my opinion, it's a small price to pay for living in the best country on Earth.  I was originally called to serve the second week of February, as, oddly, were my mom and Citygirl.  We would have all been in the same jury pool for the same trial!

As you all know, the second week of February proved to be inconvenient, to say the least. I postponed from CHOP, and when one postpones one is immediately instructed to select a more convenient time.  Not knowing what the future might hold, I picked this week.  I figured she'd be all better, back to 'normal'.  Make-A-Wish was aiming for mid-July as far as I knew then.  I had no way of knowing that neither of those things would be true (we still don't know about Make-A-Wish -  we had to cancel because Babygirl was in the hospital).

So I walked into a room with over 100 prospective jurors.  It was fairly evenly divided into  two groups:  Those under 25, and those over 50.  The girl I was sitting next to (who also ultimately made the jury also) just graduated high school two years ago with Boo'sMommy.  One of the prospective jurors (who, to his disappointment did NOT make the jury) was one of the boys who grew up across the street from us.  And more humiliating, in terms of making me feel like an old lady, the DA's intern was a classmate of CityGirl's - the one Babygirl had a hopeless crush on when she was 5 and he was 15.

The first thing the judge asked this morning was whether or not we had any personal emergencies that would keep us from serving.  Well....that's tough to really say.  Just because Babygirl is in school today doesn't mean she won't be in the hospital tomorrow.  But that seemed dramatic, and I have no reason to foresee a problem, so I stayed in my seat.  After all, I would only have to reschedule, and who knows whether the week I pick next would be as promising as this one?

And so, despite the fact that I've been a witness for the prosecution in a court case in the past, despite the fact that I've been impacted by violent crime, and perhaps because of the fact that I don't personally know any police officers (really?) I was selected to serve.

Don't ask what the case is about.  You know better - you took civics class! And I'll fill you in after we reach a verdict, when it's allowed.

Oh!  And when did Mom and Citygirl serve?  Well, the court accepted a doctor's note stating that  my Mom has dementia, so she's off the hook.  And Citygirl is in the City, so I'm not sure what the plan is for her, but I think it's time for her to officially change her address.


Monday, June 18, 2012

Maybe This Time....

Home from Philly!  This week's trip sponsored by my good friends and neighbors, Joe and Judy, who lent us their Nissan Rogue.  Nice little SUV, with a very nice ride, gas mileage about the same as Rhonda the Honda but better climate control!  But I must say that I thank God that Joe caught me as we were about to pull out and told me where the mirror adjustment knob was.  I would NEVER in a million years have found it without help!

The numbers are stable.  The kidney is happy (or at least not more UNhappy), tacrolimus levels stable, and she has plenty of neutrophils (just in time for the school year to end).  We have permission to have labs done locally next Monday, across the street!  And our next appointment is in two weeks.

Maybe THIS time they actually mean two weeks!


Sunday, June 17, 2012

Saying Farewell.....

We have had an awesome support system throughout this incredibly difficult journey.  But the people who have been supportive of us were our friends and family long before we needed them so desperately. 

So it was with tremendous sadness that I said farewell to our pastor and his wife today.  They've been with our church for eight years.  They've known us from the early days of our marriage, seen us survive foster parenting, welcomed our children as confirmed members of the church, and led us into the mission field, changing our lives forever.

They've known Babygirl since she was four, only two years after she came to us, and like so many people, they opened their hearts to her special brand of love and kindness.  I'm sure it was they who began the immense love gift collection that pulled us forward toward a more balanced budget! 

The offered me the opportunity to direct the choir, an awesome joy and responsibility that gave me many gifts during the time I was able to do it.  They brought joy and love and healing to a church that certainly needed all of those things.

We will certainly see them again, but nevermore in the special relationship that parishioners develop with a truly excellent pastor/wife team.

So PT and Judy:  God has called you to a new church!  Make them deserve you - it's what you did for us.


Thursday, June 14, 2012

Who Gets A Transplant.....

I am very late in weighing in on this subject, but this article recently came to my attention:

Basically, the story is about nearly 3 year old Amelia, a developmentally disabled child being denied kidney transplantation because of  her mental retardation. I read this, and because of our situation, immediately realized which doctor it was whose unfortunate duty it was to discuss this situation with this mom (he's one of our favorites).  And I've spent some time thinking about the entire situation.

I cannot currently find a link to the information I uncovered when I was initially researching transplantation for Babygirl, but I can very clearly remember seeing a list of candidate criteria that stated in so many words that certain people did not qualify for transplantation. 

Incarcerated criminals.  People without insurance (since the post-op medications are prohibitively expensive, and being unable to pay for them would lead to the loss of the donated kidney in a very short period of time).  People with mental illnesses of such a degree that they could not reliably follow up.  People with developmental disabilities such as autism or mental retardation who could not reasonably be expected to learn how to manage their medications without supervision.  People in such poor health from non-transplant related illness that cannot reasonably be expected to live longer than their donated organ.

I can visualize this (ask my younger brother - he'll tell you I have this skill LOL) although I can't recall WHERE I saw it and can't find it now; but I remember pausing, mentally, to think about why such people might not be good candidates.  But I confess I was focusing on whether or not Babygirl would be a candidate.  After all, she really is the only one who matters, right?

I'm not going to argue that people with mental illness, criminal histories or developmental disabilities cannot have a good quality of life.  Geniuses can have sucky lives.  People with low IQs can have joyous, meaningful lives. People in prison can change, repent, become better people. 

But in system which has over 114,000 people awaiting transplants, where only 3,375 donors made 6,838 transplants possible from January through March of this year (, how on earth can 'fair' distribution take place?  Shouldn't there be eliminating criteria?

Everyone who knows me knows that I'd walk on burning coals for my kids.  I'd let a steamroller flatten me inch by inch if doing so would protect them from harm.  And Lord knows I've struggled plenty with the "someone-else-has-to-die-to-save-my-kid" dilemma, and with the idea that my child could die waiting her turn.

I dearly love a child with autism, my sister-in-law's nephew.  I could see his parents fighting to do whatever it takes to preserve his life.  But I can see how close to impossible it would be for him to survive what Babygirl has survived. I can't see him safely managing dialysis.  I can't see him easily and consistently being able to take medications.  And there is no possibility that he'd ever be independent with these things, and every possibility that he'd fight it ALL. 

The ultimate question isn't whether or not he DESERVES a kidney if he needs one - of course he does.  The real question is whether or not the kidney would survive.  If there are limited resources, the organs should go where they will do the most good and be expected to last the longest. I think it isn't merely about a person's quality of life. As the mom of a kidney recipient, I hate the idea that her kidney could have landed in someone incapable of caring for it - HATE the idea that her kidney could already be dead because they selected an inappropriate candidate while she still waits.

I had no real idea how hard it was going to be to manage a child after a transplant - and she's completely cooperative!  After four months Hubby still struggles to understand the numbers and the meds, and he's no dummy. Babygirl will undoubtedly be able to manage independently with her medications eventually.  She's not a genius, but she's practical.  I have a very clear understanding NOW of why some people might not be viable candidates.

Sigh.  That being said, if Amelia were MY child, I might make the same choices that her parents are making, just as loudly.  And if Amelia were my patient? Dang,  I don't even want to think about it.


Wednesday, June 13, 2012

Week Sixty - Reassurance...

I spent some time talking on the phone with one of our nephrologists (numerologist?  Really, Spellcheck?), Dr. A, about Babygirl's test results, medications, and complications.

The interpretation of her lab results?  First I have to explain the language.  They measured both peak levels (easy to understand, the high blood level of the medicine a fixed time after the dose, which may not actually be the very highest but based on studies of other peoples' timed levels is considered to be statistically representative), and trough levels (the low point right before a dose, what is leftover from the previous dose). 

Generally speaking, trough levels, since they represent the lowest amount of medicine in your blood, are kept in a "therapeutic" range.  If that level is too low, the medication can't work because there are times when there isn't enough of it.  The peak levels are less important unless high levels of the drug cause some sort of damage.  But roughly speaking, the ratio of peak to trough can indirectly assess how much of a medication is absorbed and how quickly the body gets rid of it.

Babygirl has had trouble maintaining good trough levels despite quite high doses of her meds.  But when they assessed the peak levels, they are much lower (around half) of what was expected based on the dose.  Translation:  Her current trough levels are adequate, and the peaks are too low to do any damage, so no change for the time being. 

Dr. A feels that Babygirl's problem with her neutrophils will stabilize.  She's on the best meds for the time being, but will need ongoing close monitoring (translation: We're spending the summer in Philly). 

I don't think I really feel better about the risks.  And I don't think that I'm happier with the medications. But I AM reassured that the doctor listened carefully to my concerns, and responded to each of them with a logical, educated, reasonable answer.  And I'm reassured because she is also willing to admit that there is a lot we don't know and can't predict.

It's not less terrifying.  But I feel like someone in charge was willing to hold my hand.


Monday, June 11, 2012

Cobb Salad.....

It's a beautiful day when you can't report anything more interesting than what you had for lunch!

Following two nights of insomnia (really, Walter, who plays Words With Friends at 3 AM??  And seriously, who beats ME at a word game?? It's proof, if ever we needed it, that nurses ARE smarter than doctors), we had an uneventful doctor visit.  Kidney function is okay, 0.9, stable.  They did levels of her tacrolimus (spell check wants to change that to 'trilliums' LOL) both before and two hours after a dose,  the point of which was to determine whether or not Babygirl needs to take this drug every eight hours instead of every twelve.  They have the results, but here's the kicker - they don't know how to interpret them.  Alrighty, then.  I guess they are consulting with pharmacokinetic specialist (someone who studies where drugs go after you take them?) tomorrow and they'll get back to us.

I hope to heaven that they don't switch up the meds.  She has to continue some of them every 12 hours, 7 AM and 7 PM.  If they switch one to every 8 hours, she'll take meds at 7 AM,  3 PM, 7 PM, and 11 PM.  Our odds of missing a dose rise dramatically if I have to wake up, wake HER up, and give her pills.  She sleeps 9 PM to 6:30 AM, and will have to eat with the 7 AM, 3 and 11 PM doses.  She gets out of school at 3:40.  Taken as a whole, this is utterly impossible. But hey, it may never (please God!) happen.  But somewhere out there there is undoubtedly some poor mom who is dealing with this schedule.  Pray for her.

The drive down and back was wonderful, the Prius easy to manage.  It was hard to park it - I'm so used to big vehicles that I kept landing two feet away from the curb.  It got over 60 MPH on the highway (seriously!) and gas cost us under $25.

So we splurged for lunch.  We went to Perkins, and Babygirl had French toast with a side of grilled asparagus (yeah, I know).  I had a Cobb salad.  There is nothing quite so wonderful as the taste of bacon, avocado and grilled shrimp all in the same mouthful with crispy lettuce!


Sunday, June 10, 2012

Packing For A Rainy Day.....

The weather is lovely, actually.  We have a car for the trip - a Prius hybrid.  It's like your computer, you have to press "start" to both start it and shut it off LOL.

But I have a bag of  'just in case' with me. Conditioner (the hospital supplies baby shampoo if we need it). Toothpaste.  Deodorant for Babygirl (I have a permanent supply at my sister-in-law's).  Jammie pants and undies for me.  Two extra days' worth of medications. All to leave in Philly.

I figure it this way.  It never seems to rain when you have an umbrella, right?

Maybe this will stop the rain.


Thursday, June 7, 2012

She Makes Me Ashamed.....

Since the last few posts have all been me-me-me-me, I thought it was time to tell people how Babygirl is doing.  Not the kidney, not her mom, Babygirl.

Overall, she's doing well.  She's upset because she misses so much school, and always happy to return.  We play games together at night, and it's gotten to where I don't need to 'let' her win. She's becoming witty but without the teenage edge to take away from  her overall sweetness.  She's watched every episode of Glee, (maybe twice) and has become a fan of a much broader range of music, which makes her willing to switch stations to oldies and country as well as pop.  She's begun doing extra chores without being asked.  I love it when I find the dishwasher not only unloaded but reloaded.

Last Friday as we were driving home from the hospital, I said to her, "You must be getting tired of all of this."

She replied, "But you meet so many new people in the hospital!"

She makes me ashamed of myself.  But I'm always proud to be her mom.


Wednesday, June 6, 2012

Week Fifty-nine - Recovery....

I've notice that it seems to take longer for me to recover, each trip we make.  The one-day trips aren't too bad, but I've developed a tendency to take a nap when I get home!  Hubby does the same.  Whether it's because we don't sleep as well when we aren't in our own beds, or just the stress of big city traffic, something about that 384 miles just wears me out.

It's much worse when it's for more than just one night.  This last stay was for almost five days.  We got home Friday.  Today is Wednesday, and I'm just starting to not feel exhausted.  God bless my co-workers because I'm pretty sure I was riding a broomstick around all day Monday.  Tears were very close to the surface all of Monday and Tuesday, and I think I'm beginning to get a glimmer of why.

Babygirl is sick.  She's never NOT going to be sick. 

Okay, really, it's not like I just noticed or anything.  It's more of the same thing:  Adjusting to the new 'normal.' Realizing that I HATE the new 'normal.'  Understanding with my mind, my heart and my GUT just how much this sucks.  Grieving for what I thought I had.  Coming to grips with all that Babygirl has lost. 

I keep circling this.  I've run the five stages of grief around about a million times in this past year.  And every time I think I've accepted it, I find I haven't, really - not yet.  Maybe not ever.


Tuesday, June 5, 2012

The Fellowship....

A friend of mine at church gave me a card on Sunday at church:

"I know you trust in God,
so I won't preach
about knowing He's there for us
all the more when we need Him most.
And I know you have the wisdom
to see through cliches and pat answers,
so I won't offer any easy advice.

Instead, what I do want to offer
is a gentle reminder
of just how much strength
you have inside...

I've seen it
and so has everyone
who knows you.

I hope you can feel God's presence and power
in a personal way right now...
and I hope you can feel
the caring, understanding, and support
that's going out to you
from my heart.

-Ellen Brenneman-"

She included a lovely hand-written note addressed from her little boy to Babygirl along with a pin with his lovely picture on it, and a check.

Like so many of the gifts we've been given, it made me cry.  My friend belongs to the Fellowship of Moms - you know the one, the Fellowship of Those Who Suffer.  She lost her baby to SIDS this January. He is almost exactly as old as my granddaughter, Boo.

When our children arrive in our lives we have so much joy, so much hope, so many dreams.  I think we all envision the Motherhood Path - the one that has happy well-fed Gerber babies, joyful toddlers, kindergarten, prom, and college graduation between its flower-strewn borders.  None of us imagine that there will be any other way until we start walking. 

Blessedly, for most of our kids there are few detours, and those, not unbearable.  But for some...we join the Fellowship.

People frequently ask me how I manage all of this and keep going.  I won't lie.  I don't want to keep going.  But Babygirl needs me to keep on truckin', so I do, just like all the other moms who are on this particular detour.  Babygirl's illness does not stop me from being her mother.  And I bear it because it is mine to bear.  How can I turn down the joy of being her mom?  It's inseparable from the sorrow, and worth infinitely more.

The death of a baby does not stop you from being his mom.  My friend is the most awesome mom I know.  She knows her little boy is learning to toddle with the angels, and she carries on without him here, abundantly loving his older sister and refusing to let the world forget that her baby still matters.  She refuses to let go of the joy being his mom gives her, even if it can't be separated from the pain of losing him.

I used to wonder why people endowed scholarships in memory of a lost child.  Doesn't giving out that scholarship each year just yank the scab off of an unhealable wound?  And why would anyone want to keep going back to the hospital where their child has had so much suffering and stand up for fundraisers?  Walk in walks?  Memorialize your baby's name in a new church nursery?

I understand it better now.  Finding a way, ANY way, to put your pain and suffering outside of yourself matters.  Finding a way to honor the suffering of your child, ANY way, decreases the cost of that suffering.  And making sure that people understand that losing a child doesn't mean you aren't still that child's mom, MATTERS.

So in support of my friend, anyone who wants to support Mason's Room in his honor, feel free to contact me.  I'd be honored to tell you how.