Monday, April 30, 2012

Holding On.....

When you have a child who is ill, much of what you once thought was important gets stripped away.  This week has been a time for letting go of many of the things we thought mattered, and buckling down to what does:  Family, friends, and faith.

My heart has been upheld by the gift of prayer and love given by so many.  People who stopped everything to ask what, if anything they could do.  Offers ranged from a note telling me that someone would drive my car home from the ER if needed (something that would never have crossed my mind!) to food, laundry, dog walking and cat box cleanup.  We missed church on Sunday, but I'm betting that there was loud applause when the pastor told them that we were on our way home!

The soundtrack of my mind is always playing.  But this week, starting in the ambulance, and continuing until now, it has been this song:

Hold On To Jesus

I have come to this ocean
And the waves of fear are starting to grow
The doubts and questions are rising with the tide
So I'm clinging to the one sure thing I know

I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life

I've tried to hold many treasures
They just keep slipping through my fingers like sand
But there's one treasure that means more than breath itself
So I'm clinging to it with everything I am

I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life

Like a child holding on to a promise
I will cling to His word and believe
As I press on to take hold of that
for which Christ Jesus took hold of me

So I will hold on to the hand of my Savior
And I will hold on with all my might
I will hold loosely to things that are fleeting
And hold on to Jesus
I will hold on to Jesus for life

Hold on for life

Stephen Curtis Chapman.

I'm holding.


Saturday, April 28, 2012

The Paralysis of Fear....

Babygirl's been sick for more than a year now.  I've been worried, saddened, angered and disappointed.  I've had a million emotions, but until this week I think I really did not have Fear. 

I've felt it before.  There was the day, in the midst of CityGirl's non-eating phase, when I saw her jump up to catch a ball during a game.  She missed, and went down like a bag of bones.  There was the day, when CurlyGirl was 9, when nothing I did seemed to make her breathe better, and the moment came where I could see in her eyes that SHE, my most courageous child, was terrified that she might not be able to get her next breath.

But both of those times the fear was motivating.  It made me alert to the risks, and more able to take action.  It wasn't like this.  This is paralysing.

I've always thought that it's tougher to be a parent when you know what can go wrong.  Kids with eating disorders and asthma die, for sure.  But with those kids, the diseases came under control eventually, and it felt like I could fight it all and win somehow.

In this situation I have to face up to the fact that it is the very decisions we are making in her best medical interest that are risking her life and health.  This illness, this hospitalization, were caused by medications given ostensibly to save her life.  Medications which, when used entirely according to directions, can in and of themselves be life-threatening. And right now, despite stopping those medications, her numbers look worse today  than yesterday.  If things pick up we may go home tomorrow.  Or not.  And there is now way she's going to school for at least a week, maybe two.

I have never seen the fight so taken out of a child.  I never expected my Babygirl to look so beaten.  I have never, in all the time she's been ill, heard her say, "I really just want to go home to my own bed," especially not with that desperate catch in her voice. Until this time.

I make these kinds of decisions for and with patients all the time.  ALL the time.  I'm not sure how I'll be able to organize my mind to continue doing so.


Friday, April 27, 2012

It's Like Having AIDS......

People have been in touch, but the computer here is so slow that I can barely load FaceBook, let alone view the comments!  Text messages are going out in groups, and coming back in droves.  But some of the questions are fairly universal:

Have they figured out what is wrong yet?  Nope.  This is really a two part question - first, what is causing the fever?  Meds? Virus? Bacteria? Fungus? Parasite? and second, what is causing the drop in her white count? Meds?  If so, which one(s)? Virus?  Again, if so, which one? Whatever is causing the fever is resolving, but since we don't know WHAT caused it, we don't know if it's going away because of what we are doing or 'just because.'

How is she doing?  Better.  The good news is she ordered chocolate chip pancakes for breakfast.  The bad new is that she could only eat one bite and has been doing only clear liquids since.  The best news is that there has been no more vomiting, so the Boulevard prayer shawl is still in business!

Is this a sign that she is rejecting the kidney?  No.  The kidney is managing pretty well and appears not to be involved in the fever in any way.

How serious is this?  Very.  At this point in time her immune system is functioning just as poorly as someone with full-blown AIDS. Staff entering the room have to wear masks to decrease her exposure to their germs, and she has to wear a mask if she leaves the room for any reason. 

What's the plan?  They are starting her on Neupogen, which like its cousin Epogen, encourages the bone marrow, only this one pushes out Neutrophils.  They have stopped one medication, decreased another, are stopping a third (and possibly a fourth) tomorrow.  We stay until her immune system starts to pick back up.

How long do you think you'll be there? 

As long as it takes.


Thursday, April 26, 2012

You Need Your Neutrophils....

Babygirl woke up this morning crying.  Her head hurt, her legs hurt, her whole body hurt and she was FREEZING. 

Her temperature was over 103.  A call to the kidney specialists told me what I already knew: "Take her to the nearest ER."

We gave her her meds, ate breakfast (well, not her - she wasn't hungry), got dressed (comfy is important) and got into the car.  She threw up, saturating the prayer shawl we'd brought along for warmth (sorry, Lynn).  I ran into the house for a Ziploc bag and a new blanket.  By the time we hit the ER that one had to be put into a plastic bag to be laundered also (sorry, Main St crew!).

Blood work.  CAT scan.  Morphine and Tylenol.  Anti-emetics.  Repeat the vomitted meds. Poke, prod, poke.  WBC count down to 0.7, beyond critically low.

At noon, none the wiser about the cause of the fever but increasingly concerned about her inability to fight off whatever was causing it, we were loaded into an ambulance for a ride back to CHOP. We had time to pack, and I rode shotgun while Hubby drove the chase car.

By 4:30 we had finished a quick eval in CHOP's ER and were admitted to the floor.  Poke, prod, poke, repeat.  Discuss options. Consider additional testing.  Start dangerously potent antibiotics.

Right now Babygirl is sleeping, Hubby is at Sister-in-law's house, and we're all still in the dark about where the infection is and what's causing it.  The good news is we are surrounded by prayer from all around the country.

But I have never seen her look so sick.


Wednesday, April 25, 2012

Week Fifty-three - That's the Way the Money Goes.....

We didn't qualify for  the medical deduction in 2012, largely because we didn't pay all the bills!  We were negotiating with our insurance for lower co-payments, negotiating with hospitals for lower costs, and waiting to see what, if anything, Medicare would do for us. 

The final word is in:  no decrease in the dialysis co-payments.  The hospitals are re-billing many charges to both insurance companies, trying to make sure THIS time that the billing is in the correct order - first BlueCross/BlueShield, then Medicare, and hopefully most of our remaining balances will be covered. Our insurance company is negotiating with an emergency room provider group to get us a refund on an overcharge from last Father's Day. They are also working to fix a $55 co-payment overcharge from my local doctor.

We got back a sizeable tax refund.  I wrote $5485 to the dialysis company, and I think there may still be a small outstanding balance.  I paid the $490 for the kidney protector.  I wrote out the $75 co-payments for our last dialysis visits, our transplant team visit (10 days pre-transplant) and other miscellaneous specialists.  I paid for the SpeedPass bill (twenty dollars per trip x 14 trips) and updated payment to a credit card that's been picking up overflow expenses (car repairs, tires and oil changes, new toilet, things like that).  I took the girls shopping for spring clothes, especially Babygirl, who had nothing that fit her at all.  I caught up the outstanding dental balance and have enough to pay for Boo'sMom's college class.

We aren't behind on anything.  Gas/electric/phone all current.  Mortgage up to date.  There is plenty of food in the cupboard and Babygirl's lunch account has plenty.

We started this adventure with a pretty solid emergency fund.  There's a couple hundred left. And we are certainly going to qualify for the medical deductible this year between the mileage (23 cents a mile!), the bills, and my lower salary.

I have $33 in my checkbook until payday next week, a tank full of gas thanks to a friend's supermarket discount card, and enough cash to get us back and forth to Philly again because someone in my church handed me an envelope with $100 in it.  And best of all, I have a gift certificate for a massage.

God is good, all the time.


Tuesday, April 24, 2012

Out of School Again....

When we went to see the doctor yesterday, we discovered that Babygirl's white blood cell (WBC) count is very low.  More importantly, she is neutropenic (critically short on neutrophils, the WBC's that fight bacterial infections).  Since her meds already make it hard for her to fight fungi and parasites, taking out yet another arm of her immune system is a very, very bad idea.

This problem is a side effect of one of her meds.  She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant.  This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem.  Well, crap happens, right?

The problem I'm having with this is that they knew LAST week that this was a problem.  They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention.  Problem is, they never told US, or called the new prescription to the pharmacy.  So last week her WBC count was 2.7 (normal is 4.5 - 10).  This week it's 1.4. 

If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle.  So she's home until the counts come up.  We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.

And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat.  There's no fever, and it doesn't look to terrible, so we ride it out.  Yup, crap happens.

On the lighter side, you should SEE the medication she gets instead.  It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick.  It looks utterly disgusting.  Poor Babygirl!


Monday, April 23, 2012


When we arrived at the doctors' office this morning they had a letter waiting for us from our donor's family.

"For you, that received a gift from Jorge:

    Through this letter we want to express that even with the painful experience of having lost our son, we are pleased that you received his precious gifts, because now you can now have a second chance of life.

Jorge was a boy very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy.  And we hope that all these features are in your life, so he not only gave you one gift but all of these too.

With love,
Jorge's parents

PS If you want to know more about Jorge or to communicate with us, you are welcome."

They enclosed a picture.  He was a handsome young man, with curly dark hair and eyes that spectacular yellow-brown that people try to imitate with contact lenses. A sweet smile.  Beautiful eyebrows.

I haven't written yet to thank his parents and I'm not sure why.  I'm glad now that I haven't - we were told Babygirl's donor was a young woman, so his parents would have wondered if we sent the letter to the right place. 

I want to send them an entire photo album, the whole story, a link to this blog and an invitation to dinner.  I want to tell them all about Babygirl and how her life has improved because of the gift Jorge gave her.   I want her story to make it all all right for them....and I know it can't.  It can't possibly.  As sad as I have been for them, I'm immeasurably sadder now that I can SEE what they have lost, and it's still NOTHING at all compared to their suffering.  Babygirl is all of the things Jorge was:  "very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy."  And by the grace of God and the miracle of Jorge's gift, she is still here with us.

Of COURSE I want to know more about Jorge.  I want to hear anything they want to tell me about him, his hopes, his dreams, his gifts and talents.  I want too let them know that he won't be forgotten, ever.  Ever.

I read the letter to Babygirl, and showed her the picture, and suddenly it clicked in her mind.  "He's dead?"  "Yes, baby.  His mom and dad knew he was going to die and decided to donate his organs  to people like you who need them."  "That's sad!"  "Yes.  Yes it is."

It's a lot for a 12 year old to take in.  I'm not sure it's all there yet.  And truly, when all is said and done, how can any of us understand it all?


Thursday, April 19, 2012

Poster Child.....

Most of you probably thought my comment about Babygirl being a poster child for Make-A-Wish was facetious!  But it is actually true.

We got a call from Make-A-Wish asking if Babygirl would like to come in for a photo shoot.  They'd like to have her cute 'lil face on some fundraising flyers.  Babygirl is usually a bit on the shy side, so I wasn't sure it was going to actually be something she wanted to do, but she said yes, and we're going for the shoot next Monday.

If I remember I'll take along the camera - there's a picture in there of her photobombing my attempt to get a picture of Andy Grammer at CHOP.  The face mask really makes it! LOL


Wednesday, April 18, 2012

Week Fifty-two - The One Year Mark.......

It's been a year.  A LONG year - the beginning of many long years to come.  Babygirl's transformation from a normal healthy child  to a Make-A-Wish poster child has been, beyond all doubt, the most challenging year of my life.  It made me examine my parenting, my expectations, my dreams, my retirement plan, my life and my loves.  It made me put my faith into desperate action.  It made me weak.  It made me strong. 

I don't have any profound advice for anyone else.  I look at other parents with profoundly ill children and wonder how they do so well with it.  I look at parents who have lost their children and pray that I never, ever have to go there because I'll never be strong enough.  I hover.  I worry.  I pray.

I occasionally look back at some of the older posts, and wonder why I'm no wiser now than I was then.  Why, when I know there's no going back, it still long to do exactly that.  I want to go back to not believing in germs.  I want to go back to being able to to send her on a field trip without medication.  I want to go back to being able to give her fruit salad.

There are so many things to let go of.  So many things to accept.  No camp this summer unless it's a very faraway kidney camp, or a local day camp.  No mission work next year.  No medication holidays.  No way to ever look at her life without being aware of its limitations and shortened duration. 

Don't get me wrong - it's not that I dwell constantly on the negatives.  The miracle of her transplant and the selflessness of her donor's family still make my heart sing.  Her laughter, her grace in the face of hardship, her never-say-die spirit and her growing sense of herself make me proud.  Her wicked sense of humor, her growing compassion and awareness of the world around her make me try harder to be the best role model I can be. 

But I grieve periodically for what we once thought we had.


Sunday, April 15, 2012

Donate Life.....

Most people think that signing a driver's license is enough.  But it may NOT be true in your state - it isn't in mine. 

Please go to this website and make absolutely SURE that you are a registered donor!

It may take a moment's effort, and a stamp.  But it may save at least six lives.


Friday, April 13, 2012

Week Fifty-one - Playing the Numbers Game.....

Babygirl's visit to Philly on Monday netted the worst lab reports we have had since the scare immediately post transplant. Her anti-rejection medication levels are fine. Her liver function is approaching normal finally. But her creatinine has risen a bit.

Creatinine is a by-product of muscle breakdown.  Normals vary by age due to expected muscle structure.  Kids should have very low levels - 0.6 or less is typical.  Babygirl's new kidney got her to 0.7 for a day or two in the hospital, and settled at 0.8 from then until Monday, when it rose to 1.0. 

Since this measure of renal function is exponential rather than linear, a 0.2 rise represents the possibility of a significant loss in kidney function, especially if it is the beginning of an upward trend, so the team's response to this was more intense than one might expect.  Her BUN was also elevated, and that most likely indicates that she's a bit dehydrated.  Since her native kidneys are still in place, and still probably dumping water, her new kidney is responsible for managing fluid balance in a more challenging environment.

Simply put, Babygirl has to drink more.  A LOT more.  But she's an adolescent.  She's not allowed to use drinking fountains because of the possibility of infection.  She's supposed to carry a water bottle at all times and drink at least two daily at school.  But since no one else is allowed to do that, she's getting a lot of  "That's not fair!" from her peers. So she doesn't want to carry the bottle.  It's bad enough that she gets ragged for her chubby red cheeks - she can't leave THOSE behind. This she can control.

I had a conversation with her, the first, I assume, of many, about whether her peers' stupidity or avoiding going back on dialysis seems more important to her.  I reminded her, as gently as I could, of how painful it was, and how much she hated it. 

The tests were repeated yesterday.  Creatinine is 0.9, and BUN is lower also, but this is spring break and no one is bugging her to do anything except drink. 

Water shouldn't be a battle, should it?


Tuesday, April 10, 2012

Car Conversation....

Babygirl is a LOT more chatty since she got her new kidney.  Used to be she'd get in the car and simply conk out until we got "there."  Now, although she usually sleeps SOME of the way, there is a lot more talk, although I can't honestly say it's always "quality time."

1) Babygirl:  I like them hard and sweet.  Me:  I like them hard and sweet, but there needs to be some tartness. ( Discussing different types of apples and defending our favorites.)

2) Babygirl:  Mom, why does that truck have such HUGE tires?  Me: Because that guy has a little... oh, never mind.  Babygirl:  MOM!

3)Babygirl:  Do you know why my stomach is always happy?  Me: Why?  Babygirl:  Because it will always have a smiley face on it!  (True.  The combinations of scars DO make a smiley!)


Sunday, April 8, 2012

An Extra Basket....

The Make-A-Wish wishmakers got caught in the act dropping off a beautiful basket for Babygirl.  I guess they don't just do Wishes!


Saturday, April 7, 2012

The Easter Bunny......

Thankfully, my kids don't read this blog unless they think there is a post specifically about THEM, so I am unlikely to dash any illusions with this announcement:

My brother is the Easter Bunny.

Since CityGirl was tiny, one or the other of my brothers has been the Easter Bunny.  See, the Easter Bunny comes to our house while we are at church on Easter Sunday morning.  This explains why my children appear to be so well-behaved at that service.  They are the only kids there who are not hyped up on chocolate and jellybeans! This tradition has carried forward despite the fact that there cannot possibly be one child of mine left, including Babygirl, who thinks that there is a REAL Easter Bunny.  In part this is because our kids love candy, and are willing to go along just to get better loot.  In part it is because the Easter Bunny himself has a little one who is just now old enough to be pretty sure that there really isn't an Easter Bunny.  Partly it's because there are now grandkids young enough to hunt for eggs and believe (my eldest grandson is only 4 years younger than Babygirl).  But I suspect that the Easter Bunny, cunning old soul that he is, simply enjoys camouflaging Easter baskets and watching kids suffer through trying to locate them.  And he REALLY loves that moment, months from now, when we finally locate that last ("OMG What is that SMELL!") Easter egg.

I called my brother a few days ago to confirm that we are still on for the Easter Bunny gig.  He confirmed that he and his helper would be along to do the job.  And then....

"The Easter Bunny would really appreciate finding something warm and sweet....."

Not that I am at all stressed.  But this is (more or less) the rant that followed:  "I put four THOUSAND miles on my car last month driving back and forth to the doctors with my sick kid while working a full time job.  I am making Easter dinner, making the eggs and I already have the damned dye for the coloring party, which is at MY house, so the Easter Bunny can..."

" his own f***ing donuts?" replied my brother, with a laugh.


I love my family.


Friday, April 6, 2012

Week Fifty - Parent-Teacher Conferences......

Babygirl's parent-teacher conference was yesterday.  I wasn't entirely sure what to expect.  After all, she's missed as much school as she's attended this quarter.  I was particularly concerned about her music class.  Arts classes (music and art) are only one quarter long.  The rest of the year is divided between Technology (known as "shop" when I was in school) and Home and Careers (known as "home ec" in the dinosaur days, and aka "Homos and Queers" to the extremely un-PC kids of our middle school). 


Things are going extraordinarily well.  It seems that having a new kidney makes you smarter.  She is keeping up with her homework and nagging her classmates to do the same.  She is more social.  Less distractable. Her test scores are up.  Her math and reading skills have taken a decided turn for the better.  Her overall average will likely put her up for Honor Roll for the first time in her life. 

Her teachers generally exempted her from missed work while she was gone - especially music.  But her current test scores reflect the entire quarter's learning, including what she missed. 

The only test she did poorly on was one where the class had a BIG review the day before the test.  We were in Philly on review day.

I'm so incredibly proud of her.  She works hard, and deserves every good grade she gets.  But before the transplant she worked every bit as hard, and was barely getting by.  I think, perhaps, that she WASN'T the "healthiest sick kid you'll ever meet."  I am certain that we underestimated exactly how sick she was. 

This thing snuck up on us.  Her kidneys took years to die, and we were totally unaware that it was happening.  Her school struggles were simply part of who she was.  And when the dialysis doctors told us that dialysis would make her do better in school, we were (rightly) skeptical about it.  Dialysis is NOT a cure for kidney disease.  Their goal was to change the metabolic chaos of total kidney failure to the appearance of manageable insanity.  And while it was clear that she did feel better, the sleeplessness and ongoing anemia were adding to the fatigue and lack of concentration.

Because the kidney failure was gradual, and because she had such a huge history of things that could slow her down (starvation in infancy, leg fracture at 9 months, functional blindness diagnosed at age 6) we had no reason to think that there might be MORE. 

I suppose I could feel guilty about this.  I don't, really.  I still feel bad that we didn't notice that the poor kid couldn't SEE, but this was far more insidious.  I'd like to be able to give a list of things that might have tipped us off, so I could share it with other parents and maybe help them find this sooner.  But I can't really think of ANY except the fact that she complained of feeling cold.