Monday, December 31, 2012

Week Eighty-eight - Hope for the New Year.....

It's been a quiet holiday week.  Christmas Eve was spent with family, a lovely church service that included Boo and Squeaker, and some assistance by Santa's finest helpers (Hubby, me, Citygirl and my oldest nephew, known to the gaming world as Parrow).  I was in bed on Christmas Eve by 10:30, a personal record early retiring time. 

Christmas morning I was the only one up from about 6:30 to nearly ten when I finally sent out some text messages to see where all my sleepyheads were!  Babygirl is the only "child" in the house, and even she was in no hurry to check out the bounty under the tree!  By the time Jujubee, Curlygirl, and Bella (one of our foster kids, now grown and with a little man of her own) came, present-opening was in full swing. 

Sadly, I was nursing a violent cold, and spent a good bit of Christmas day dozing on the couch, and bless everybody else for making that possible.  Dinner was lovely (great, great thanks to my sis-in-law for making that AMAZING cake!), the day peacefully chaotic.

But my best present by far has been the hopeful direction taken by Babygirl's headaches.  She's not waking up in pain every day.  She's not laying around doing nothing for hours on end hoping for a break in the pain.  She's not needing pain meds for times a day, and nausea meds around the clock. 

She's feeling better.  There have even been a couple of days with no pain at all. 

Hope is a very, very good feeling.  Looking forward with my head up instead of feeling like I need to duck-and-cover feels very good indeed.

Happy New Year's Eve to all of you!  Be safe, be blessed, be at peace.


Wednesday, December 26, 2012

Thank God for Elves.....

When I arrived home from work on Christmas Eve I found an envelope on my dining room table.

"Merry Christmas. 
         -Santa Claus"

I asked Babygirl where it had come from:  "Some dude came to the door.  He said he reads your blog."

Hmmm.  Who knew Santa had time for blog-reading so close to Christmas?

The envelope contained $250. 

Thank you, Santa-dude! 


Monday, December 24, 2012


If, God willing, we do not need to make an emergency year-end run to Philadelphia, we have our travel mileage total:  14,701 miles specifically limited to medical travel alone.  Almost fifteen THOUSAND miles.  That's a whole lot of highway and byway by the way.

I did some math.  We could have driven to my Aunt's in Sacremento, and back.  Almost three times.   We could have driven to my sister-in-law in Tampa Florida - SIX times.  We could have mixed it up:  One trip to Sacremento, two to Tampa, and two to Disney's Magic Kingdom.  Or hey - we have friends in Austin!  We could go there.  California.  Tampa.  AND Magic Kingdom, and have some miles leftover.

You get the idea.  We did a LOT of driving.  I haven't calculated the tolls paid, but at roughly $24/Philly trip, with (I think) 34 trips, that's $816.  The medical mileage allowance is $0.23/mile, so that's $3381.23.  Add those to our uncovered medical expenses and we might maybe qualify for a medical deduction.

I'm sure I've said this before, but it bears repeating:  In order to qualify for a medical expense deduction, you have to spend AT LEAST 10% of your taxable income.  And you don't deduct the entire amount.  You deduct however much you spent OVER the 10%. 

Suppose you make $50,000 a year, taxable.  You spend $6000 on uncovered medical expenses.  Ten percent of your income is $5000.  $6000 minus $5000 is $1000.   That's your deduction - you'll get an extra $1000 on your tax return to throw at your $6000 bill.  And while you can include things like hotels (which we thankfully never needed) you cannot include the restaurant meals (which are FAR more expensive than what we would have made at home!). What this means is that every family in America should have an emergency account set aside in case of medical disaster at least equal to $10 of your taxable income.  And, in my opinion, that would be in ADDITION to the six-months'-worth-of-expenses emergency account that the money-management gurus say everybody is supposed to keep on hand anyway.  Everybody should have a disability policy to help cover lost income. Very few people I know have either expense pool saved, and almost no one I know has a private disability policy  We were lucky - we did, and we needed all three.  And now we have neither savings account and have to start over (which we have, but it's a slow process!).  True, we were hit with three medical disasters in less than two years, and that emergency bathroom gutting put us back a bit! 

One of the things I understand very well from serving the working poor is that most people are only one injury or illness away from abject poverty.  I have seen, many, many times over the years, how that one illness can put people behind on their rent or mortgage, leaving them homeless.  How people have to choose between food and rent while medical bills pile up.  I've seen homeowners go from mortgage-free to underwater to try to finance medical expenses.  I've seen people choose to stop treating their blood pressure and diabetes because they have no insurance are are ashamed to ask for help, or admit they need it - until they have a stroke or go into kidney failure and have no remaining options.  When you've finally lost everything, then the government will step in and help.  But you have to have lost EVERYTHING.

We are the lucky ones, as luck goes.  We have supportive friends who have kicked in over and over and over (and over and OVER) again when we needed a boost.  We had savings, and disability insurance.  We've kept up with the mortgage and the credit cards are clear.  Babygirl got a kidney, while so many are still waiting.  We've come a long way, and traveled safely.

And that isn't all about the miles.


Sunday, December 23, 2012

Welcome to The Bench....

Theologically speaking, I truly believe that when I die I will go straight to heaven.  But our family has an ongoing joke about having to make a stop on the way The Bench.

The Bench is on the warm side of Purgatory.  We can tell because we frequently smell bacon cooking.....our bacon, as it were.  It's not uncommon for someone in the family to say something, well, hysterically funny but rather unkind, and then rub their hiney and say, "Do you smell bacon?"  We figure The Bench has our family name carved on the back.  I might stay there so long the grandkids will meet me there. 

Today is my Mom's 75th birthday.  In anticipation of this event, Babygirl and her cousin were baking sugar cookies. I was cleaning, and Hubby was putting together a fantastic lasagna.  Some distance separated us all, and none of us could see out of the same windows. 

I suddenly heard Hubby exclaim, "Well, speak of the Devil!"

From the other side of the house came this reply from Babygirl:  "Oh, Grandma is here??"

Welcome to The Bench, Babygirl.  I'll save you a seat.


Friday, December 21, 2012


I touched briefly on Babygirl's lab results yesterday in the middle of my self-centered rant.  But since this blog is ostensibly about HER, I figured I'd best fill you all in.

Her kidney is very happy, holding to a creatinine of 0.8, even when she was sick last month.  She remains anemic despite the fact that her new kidney should be producing adequate amounts of erythropoetin.  I suspect that she may have been anemic before she developed kidney disease.  We never checked, so we'll never know.

But her liver is not happy.  She had some liver function elevations immediately after her transplant, with some numbers running as much as 15 times normal.  This is not as severe.  She has a couple of tests running about three times normal, but since they've been ENTIRELY normal since shortly after transplant, it's not a good thing. 

The theory is that she is taking so much Tylenol (about a hundred 500 mg tablets every month) that her liver can't quite tolerate it.  We've been instructed to get the 325 mg tablets (harder to find but our pharmacy is putting some aside for us) and to try to not have her take even those as much.  So now what are we to do for the headaches?  They had no suggestions.

They gave her new medications for the nausea that comes from the headaches since the one she was using was helping with neither the headaches nor the nausea.  She's lost six pounds since her hospital stay three weeks ago.  The steroid-induced weight needed to come down, for sure, but having her so nauseated that she can't eat for a month wouldn't have been my first plan for weight management.

They want to recheck her in a month. But since neurology wanted to see her in mid-January, that's when we'll likely go back.  Since they area already moving at the speed of snails to fix her headaches, I'd hate to miss an appointment.

We haven't managed a full month with no travel yet.


Thursday, December 20, 2012

Week Eighty-seven - The Best Laid Plans....

Not ten minutes after I published my last post ( I got a call from Hubby.

"I'm in the rest area.  And Rhonda is dead."

Less than one week ago our mechanic put a SECOND new alternator in.  We had no problem on the four-hundred-mile round trip to my Dad's, or on the week's worth of running around since then.  Hubby didn't notice any problems, but Babygirl needed a potty break.  And just as he pulled off the highway, electrical stuff started fading out.  Radio.   Heat flow.  Lights.  Turn signal.  All symptoms he's now familiar with because I've described them to him.  Twice.

He managed to get Rhonda to a legal parking place, and was unable to get her restarted.

I was still at work when he called.  I had to announce the problem, set people to rescheduling today's patients, finish all the paperwork I could and run.  Somewhere along the way I realized I needed to find someone to care for the dog.  One of my best friends, along with Babygirl's best friend and our usual dog-watcher, had just that day packed up and moved away to Florida.  JuJuBee has no phone, so that left Curlygirl, who, bless her, packed up Squeaker, herself, and all her laundry and climbed into the big Green Goose van and came to spend the night.

From the time of Hubby's call to my departure from home:  Ninety minutes.  No time available for the good cry I truly, truly needed.

We left the Honda at the rest stop, and traveled on to my Sis-in-law's house, discussing options all the way.  We got Babygirl to the doctor this morning (kidney is doing well, liver is not at all happy with the amount of Tylenol she's been using for the headaches, no new suggestions for what to do about them except to use LESS Tylenol) and returned to our home base (through the worst traffic we've dealt with in Philly so far EVER) to see what we could do about the car. 

My plan was elegantly simple.  I called uHaul and asked if we could rent a towing system, so the Goose could pull Rhonda home.  The simple answer is "yes, we have that equipment for $50."  The complicated answer was that they wouldn't rent it to US because the Goose is not powerful enough (per their standard rules) to tow Rhonda without risk to our transmission.  Renting one of their trucks plus the towing system was over $250.  Having Rhonda towed home was $480.  Towing her somewhere local for repair was $80. 

By the time we met up with the tow truck it was nearly four o'clock.  We were ninety miles from home and had to get to the pharmacy by six without fail to pick up new medications.  And Babygirl had a headache so bad she wanted to throw up.

We're home.  We had KFC for dinner, again, and Hubby is taking Curlygirl, Squeaker, and her 683 pounds of clean laundry home.  I'm not actually sure where Rhonda is, what's wrong with her, how much it'll cost to fix her, how we'll get her home when she's repaired or whether or not we'll keep her when she's fixed.

The only good part of this story is that I got to have a drink last night with my best friend and my Hubby.  But as my sister-in-law so eloquently said while we were having our drinks, "I'm SICK of making lemonade."

Yup.  Enough with the freakin' lemons.


Wednesday, December 19, 2012

Night Off.....

Babygirl and Hubby are driving off to Philly without me tonight.  They'll be seeing the transplant team and coming home on Thursday (Lord willing and the numbers don't rise).   I'm on my own for an entire evening.

Don't get me wrong, I love my family, and I love spending time with them more than anything.  But now and again I like to just be alone inside my own head.  I'll finish my workday, go to Bible study, and then, if I feel like it, I'll do some shopping.  Or not.  Or maybe not for groceries or Christmas, just for me....oh, wait, I HATE that kind of shopping, never mind! 

I can check out Ollie's and see if they have any cheap interesting books.  I can go home, light a fire and enjoy the Christmas tree.  I can take a walk and check out my neighbors' lights. 

It's nice to have a stretch of time (however brief) where there is no concrete plan, no pressing 'to do' list, no one pulling on my pant leg begging for attention or food.  However lovely it is to be needed, however fulfilling it is to be necessary; it's equally lovely to let the weight of the responsibility slide off my shoulders and rest somewhere, ANYwhere, else.


Monday, December 17, 2012


There've been a million million Facebook posts about the horrible shootings in Connecticut.  Debates about gun control.  Expressions of grief and horror about precious lives cut short.  Posts about twenty new angels. Admonitions to 'hug your kids,' as if that will protect them, or change what happens to them when our backs are turned.

Please don't think that I view these shootings coldly.  We had a mass murder here in our town a few years ago, and we are still reeling from its effects on our community.  Every time I hear of another one, my heart simply tears into aching pieces.  I've held a mother in my arms as she grieved the senseless loss of her young daughter.  I 'get it' as well as anyone who has not actually lost a loved one in such a way can.

But there is SO much 'magical thinking' out there.  So many of us look for answers, not so much in support of those who have lost loved ones, but in hope of avoiding such disasters in our own lives.  And as appallingly frequent as these utterly newsworthy events are, most parental losses occur quietly, one child at a time. 

Cancer.  SIDS.  Cystic fibrosis. Kidney disease.  Sickle cell.  Asthma. Eating disorders.

Each and every one of these diseases kills more children each year than mass homocide.  Each one leaves hundreds of parents to face holidays with empty arms.  Each of these leaves brothers and sisters, grandparents and cousins, lost and grieving, regardless of the time of year.  And most of them cause years of suffering beforehand.

We learned that hard way that bad things happen, and that we can do nothing about it. 

By all means do whatever God calls you to do in response to this sad event.  And do hug your kids. But do not fail to remember to hug the parents around you - the ones whose children struggle and suffer, and the ones whose children have gone home.  Those parents need you, really need you.


Friday, December 14, 2012

Week Eighty-Six - Superstition.....

We are leaving today to visit my Dad.  It's an annual pre-Christmas journey.  I love to go despite the drive because it gives me one solid day where I have nothing to do and no responsibility beyond picking up a couple of the famous local pizzas. Despite the fact that we are traveling four hours directly into the snow belt, we've never had weather so bad that we've had to cancel, turn back, or stay extra days.  Rhonda the Honda had her obligatory pre-trip breakdown yesterday (the alternator that the garage JUST installed died - easy fix, no charge), so I am superstitiously confident that she'll make it there and back, no problem.

The same feeling surrounds my thoughts about Babygirl.  I realize that statistically speaking, she is just as likely to get sick five minutes after her last illness as five months after, but still....  I feel like the recent hospitalization has "sick-proofed" us for the holidays.  I expect she'll have headaches, but that's our 'new normal' anyway, right?  After all, she's been averaging one hospital stay every two months - February, April, May/June, August and November/December (we've been in twice for 'month changes').  So we should be in the clear until February unless the germ gods notice that we skipped October.

Seriously.  Knock wood, throw salt over your shoulder, avoid black cats and stay away from ladders.  All of those make as much sense as most of my thinking regarding Babygirl's struggles.  Near as I can tell, there is no way to 'disaster-proof'' our lives.  It's just more Magical Thinking.


Monday, December 10, 2012


After my meltdown at CHOP the night of Babygirl's spinal tap, hospital staff wheeled her stretcher back to her room.  We were accompanied by a security guard, not because they thought I'd lost my mind, but because there is a system of 'patient only' elevators that are operated by staff ID badges.  These can be called ahead for by security and held where they are needed - a very important feature when one is transporting a very sick kid. 

While this journey was in progress, our security guard, who clearly had a bead on how close I was to complete hysteria, stopped with us, keyed into a room off the hallway we were using, and came out with a handmade quilt.  She covered my sleeping Babygirl with it, saying, "She looks like a girl who likes red."  The quilt is red, white and blue on the patterned side, and red, white and black on the back. 

Babygirl was wearing hospital scrubs and draped in white hospital blankets, leaving only her face and long black hair showing. 

But she was right, somehow.  Babygirl's favorite color IS red, and coupling red with black and white defines her usual use of the color.  It was a comforting moment. 

There are a variety of organizations who make quilts for sick children - she received a very small one when she got her kidney transplant.  Whoever the folks are who make them ( and among others), we appreciate them.  They have brought bright spots to many dark days for sick and needy children.

And Babygirl is thrilled to have the quilt - she has it displayed across the back of her futon/couch in her room.


Sunday, December 9, 2012


Babygirl continues to have headaches daily.  Each morning she comes down with her sunglasses on, takes her meds and goes back to bed.  Even our optimism has a pessimistic sound to it.  Earlier this week Hubby, in a totally hopeful tone of voice, said, "Well, I don't think she looks QUITE as terrible today as she did yesterday!"

And for what it's worth, I agree with him.  She has either so adjusted to her level of suffering that she is able to shrug it off better, or she is actually suffering less.  We managed to to a bit of Christmas shopping two days in a row, and she insisted on going to our church this afternoon to help decorate the sanctuary. 

While we were out shopping her eye was caught by a display of $50 sterling silver bracelets engraved with various encouraging quotations.  We read several of them together. 

On the way home she said, thoughtfully, "I know those bracelets are really expensive, but I really loved the last one we looked at."

"God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I'm reasonably sure she's never seen or heard that prayer before.  And I'm touched and impressed that that was the one that stuck in her mind.  I asked her whether it was the prayer or the bracelet that she loved the most.  "The prayer." 

 I have no problem with the price.  If I had it I'd pay a hundred times that much to make it possible for her to hold such a thought in her hands and heart.  But I know her well enough to know that a bracelet won't survive long in her care, and if it's the prayer that matters, and it is, there are hundreds of ways to make that a visible part of her world.

I see a trip to the Christian bookstore in my immediate future.  I'm betting I can find a poster or a plaque that will look lovely in her room, and possibly a necklace to give us serenity when we're on the road.


Saturday, December 8, 2012

Too Much Light.....

Each year in Babygirl's memory we have trekked out to a nearby tree farm and hiked from one corner to the other and back to select a tree.  We've squelched through mud, cold rain, snow, and one memorable year, ice disguised as mud.  We've done it with as many as seven kids, and often with friends thrown in. 

Thanksgiving was early this year, and we didn't think a fresh tree would be looking to healthy by Christmas if we cut one on the 24th of November, so we decided that December 2nd would be our tree trek this year. 

Until Babygirl got sick.  Again. 

Five days in the hospital is a physical challenge.  Three nights of almost no sleep because your child is suffering is doubly disabling because it completely takes the heart out of you.  Somewhere around Thursday afternoon I started to feel as if maybe, just maybe, I was starting to recover.  By last evening, it was clear that although I'm certainly better rested than I was on Monday, I wasn't going to have the energy to do everything I need to do this weekend - get and decorate a tree, clean the house, and do some much-delayed Christmas shopping.  And Hubby has his own dark sorrow.  His Dad died last year on Christmas Eve, and he is grieving still.

Hubby and I talked it over and made a tough call - buy a pre-cut tree locally.

Babygirl was disappointed.  Although I certainly remember many times when I've gone to a local shop to get a tree, she doesn't.  And the break in tradition saddened her.  And since we usually go in the morning to get a tree, we decorate it as soon as it goes up.  But last night, the tree went up at 9:30 PM.  So no lights.  No decorations.  No angel.

I had a bit of insomnia last night, and when I finally gave in and got up at 4 AM, I decided to tackle the tree lights.  Each year at least one of last year's string of lights expires.  In anticipation of this, I had gotten some of the new LED light strings in a pre-Christmas sale.  I tested the old lights, and had seven working strands of 100.  It's a smaller tree than usual, so it should be enough, I think. 

Until I got to the bottom foot of the tree and ran out.  I pulled out the new lights.  Not a good color match (and LED lights appear to VIBRATE when they are handled - a nightmare for the migraineur!).  Hoping that it wouldn't be too noticeable, I strung them and stepped back.  UghUghUgh. 

I got another cup of coffee and sat down to consider the matter.  I can either re-string the entire tree, leave the bottom foot a bit dark, or add another layer of lights over the ones that are already there to make it blend.  I opt for the extra layer of lights. 

I was thinking as I worked that this was going to be entirely too much light.  But then.....

In this darkest season of the year, in this dark time in our lives, how can we have too much light?  As we celebrate the arrival of The Light in our lives, how can we forget that "the people who walked in darkness have seen a great light"?  How can we forget the angels, the proclamation of peace on earth, and the overwhelming light of the Star?

I had just finished when Babygirl came down for her morning medications at seven. 

When she saw the tree, all 1000 lights were reflected in her beautiful smile.  Despite the sunglasses, her heart clearly agreed - there is no such thing as too much light.


Wednesday, December 5, 2012

Week Eighty Five - Magical Thinking....

Five days in  a hospital gives you lots of stories.  You meet a lot of people:  Doctors, nurses, housekeeping staff, other parents, chaplains.  You meet people who've been around a long time, and those who've just started. 

Resident physicians ARE doctors.  Their level of experience varies from 4 months to 5 years post medical school graduation.  The Fellows have finished residency and are doing specialty training.  We are always, and will always be, admitted to nephrology.  And we are always placed on the same floor. 

I initially thought that 'our' floor was dedicated to kids with kidney disease.  It turns out that it's dedicated to the adolescents.  The rooms at the end of the hall with the snack bags on the counter?  That's the eating disorders section.  Kids with diabetes are common.  Asthmatics, a dime a dozen.  So we see two teams of doctors each day:  The nephrology team, and the adolescent team.  Each team has Attendings, Fellows, Residents and the occasional student.  Generally speaking I have no objection to being "a good teaching case."  Lord knows I benefited greatly from the patience of all those patients willing to let me learn what I needed to learn, often at their expense, and not always to their benefit. 

But when it comes to procedures I want to know who's going to be poking at my kid.  So I'm STILL miffed that I never met the person who performed Babygirl's spinal tap.  I have no idea if this was a person who graduated med school in June of 2012 or whether there was some experience there.  But on Monday morning I met the neurology resident who innocently let me know that whoever it was who STARTED the tap, she was the one who finished it when that person didn't succeed.

I'd already noticed that there were two puncture marks on Babygirl's back - in fact, I'd taken a picture so Babygirl could see them.  If I had given any thought to it at all, I had mentally dismissed the second puncture as a local anaesthetic injection site.  In retrospect, that was a silly assumption.  Why do a local when the kid is knocked out?

I've done LP's myself.  To the best of my recollection, it's a simple test, and of all the ones I did (and I did dozens)  I can't recall missing even one.  Not even the first one.  But I know it happens.  I also know (because I did it myself) that it's easy to hit a lumbar nerve in the process. 

That's what happened to Babygirl.  The worst of the pain for two days after the puncture was a deep burning discomfort down the side of her thighs.  Her back hurt, and her head hurt, but it was her legs that were the hardest to bear, and hardest to relieve. 

Quite honestly, either person (or both) could have hit those nerves as a normal consequence of the tap.  And I'm guessing the consent I signed on arrival allowed for teaching.  But I want to think things might have gone better if neurology had been on board from the beginning, in charge of supervision instead of the anaesthesiologist.  This thinking is patently illogical.  Anaesthesiologists do hundreds and thousands of epidural injections, and the process is nearly identical (and actually somewhat more technically difficult).  And does meeting the guy who is going to do the procedure actually make him able to do a better job? 

It all comes down to control.  All parents with chronically ill children engage in Magical Thinking.  "If I do ___________ (fill in with any ridiculous idea, like, say, "meet all my kid's doctors") then my kid will ______________ (fill in THIS blank with any impossible thought, like "be magically cured and go back to the way it used to be").    We might as well determine that we need to learn to walk on water and turn that water into wine in order for our kids to thrive.  It's hopelessly hopeless.  We can't control what happens, and we can't go back.

We cannot go back.


Tuesday, December 4, 2012

Dark Nights of the Soul.....

Staying up all night to comfort a child in pain is a dark, dark thing.  It's one thing to hold the hand of a daughter in labor.  The pain is intense, but the outcome is so joyous a prospect that there is no bottom to the well of support and understanding available. 

For a sick child with chronic pain there is no such well.  Dealing day to day with a child who is dealing day to day with chronic pain uses up reserves of compassion and tolerance.  It's not that you are tired of or angry at the child.  You are tired of and angry at the pain.  Hugs and hand-holding only get you so far, and both of you end up not even wanting to acknowledge the pain.  It becomes the elephant in the room.  It becomes the elephant sitting on your optimism, your hope, your resiliency.

Add a new, acute pain to this scenario and you have a recipe for exhaustion and despair.  Holding my Babygirl through night after night of pain triggered by the spinal tap hit me below the belt somewhere. 

"Breathe through it, baby.  If you can't breathe, talk - it will hurt less than crying does." 

And talk she did.  About how much she hates the pain.  How tired she is of the pain.  How much she HATES kidney failure, transplants, and hospitals.  How much she fears abandonment, death, and being left alone.  How she has nightmares about these things, and what those nightmares look like.

Dark nights of the soul, indeed. 

Everyone who knows Babygirl is amazed by how well she has handled her illness.  But now I know better.  It's time to get some outside help.


Monday, December 3, 2012

Last Day In....

We are safe at home.  Babygirl has new meds, a written ER plan, but no new advice about how to deal with the headaches day by day.  She was pain free all day yesterday, and started a new headache today at dinner.

Some minor questions remain.  What's up (or rather down) with her blood pressure?  She hasn't restarted her blood pressure meds and as of this morning she was still running low.  It's under observation.  I'm guessing that it won't take that long to rise and again require medications.  We have instructions on what to do about it if it happens.  What caused the fever?  Aside from one episode of vomitting, she had NO other symptoms.  This makes Hubby very nervous, but I don't really care.  They did find that funky Group G strep (which usually doesn't make people sick but that she's had twice during illnesses in the past year).  The antibiotics she was on IV should have taken care of it, and they want her local doc to do a throat culture when she isn't sick to see if it's just something she carries around.

Other than this, the scary questions have been answered.  There are no brain tumors or aneurisms.  No spinal tumors.  No brain or spinal cord degeneration.  No viral, bacterial, parasitic or fungal infections of the spinal fluid.  No increased pressure on the brain.  No evidence of nerve irritation or damage.

Migraine.  Migraine and an unrelated unidentified viral illness, or strep throat variant.

I'll take it.

But I made a suggestion to the staff at CHOP:  They should keep a bowl of Valium at the nurses station, kind of like a bowl of M&M's, so the parents can help themselves as needed.

Oh, and they should outlaw this question:  "Are you all right?"


Sunday, December 2, 2012

Kindness, and Finger Crossing.....

Babygirl has been headache-free since this morning at 8.  She is clear-eyed and sunglasses-free.  We had breakfast together in the cafeteria, and took another walk to get a new movie (Eclipse - sorry, I tried to get one more 'classic' in).  She's still not eating much and picked clear liquids for lunch and dinner, but that's not a problem.  No more fevers either.  If she wakes up without a headache we'll likely be on our way home.  Infectious disease has signed off the case, and I've pushed neurology to get some prevention meds started.

Please keep praying, fingers and toes crossed!

Now let me change the subject.  Remember the iPod?

I was listening to my iPod when the nurse came in and told Babygirl had been moved upstairs to recover from anaesthesia, a totally unexpected move that in retrospect seems fairly trivial but at the time was rediculously traumatic.  Somewhere between there and our return to our hospital room, the iPod vanished.  I retraced my steps the next day, going from MRI to PACU and back.  I searched our room.  I called security and they checked the lost and found and there was no iPod.

Ah, well.  Babygirl is doing well and although I can't afford to replace it, I can live without it.  Given how hysterical I got over an unexpected elevator ride, I was really not upset about this.  It's just stuff, right?  And if we've learned nothing else in the past year and a half it's that stuff doesn't matter - people do.  In fact, when a dad on our floor was searching for an iPod charger I gave him mine.  After all, I'm not going to need it anymore, right?

When I checked my email last night there was a note from a total stranger telling me he thought he'd found something of mine at CHOP, and that he'd turned it in to the lost and found.  I checked the time stamp on the email, and it predated my check with security.  It was puzzling enough, though, that I physically went to security and asked in person, telling them about the email.

My iPod was right there.

I've emailed back and forth a couple of times with him.  He was the young man in the PACU waiting room who magically produced a box of tissues when I started crying.  He and another CHOP employee calmed me down and comforted me when I was alone and afraid.  They, with the young man who delayed leaving work to escort me to the correct place are the heroes of my stay this week.  I'm pretty sure there is nothing in any of their job descriptions that includes tantruming adults, but they were marvelous nonetheless.

Kindness is never wasted.  And how hard is it, anyway?  I feel like I was repaid in 5 minutes for every time I've been the one to whip out the tissues and hold a hand.

But I think I'm going to need a new iPod charger.  Some forms of kindness apparently work out better than others LOL!


Friend or Foe....

Babygirl failed to improve with the first two migraine treatments yesterday.  So Neurology and Nephrology put their heads together and picked a third move.  Steroids.

Cortisone-family steroids are a two-edged sword for sure.  Babygirl takes prednisone 5 mg. daily.  This is the lowest she's been on: At various times she been on twenty times as much, and some of the other 'flavors' of the drug (prednisilone among them) have been used in substantial doses as well.  Prednisone is one of her anti-rejection medications.  Its benefit is that it keeps her immune system from 'seeing' the new kidney.  The other benefits of this class of drugs is that they can act as potent anti-inflammatories.

The down side of this class of drugs is a terrifying list of side effects.  It makes you more likely to get infections.  It causes osteoporosis, weight gain and diabetes.  And long-term daily use can convince your adrenal glands that they are no longer needed in a crisis.  Steroids are our foes.

And that last one is something no one really thinks about.  Your adrenal glands do more than run your fight-or-flight responses.  Or to be more precise, you need your fight-or-flight responses in many subtle ways aside from the ability to lift cars off of injured children.

Which brings us to Babygirl.  Migraines have an inflammatory component, so high-dose steroids are frequently given to break protracted migraine attacks.  This was tried once a couple of weeks ago, although strictly speaking she got a more moderate dose and a rapid taper.  So trying a true high-dose pulse is a reasonable thought.  Steroids are our friends.

But Babygirl has a fever, origin unknown.  Steroids can make infections worse.  Her heart has been racing, and her blood pressure is too low OFF of all of her antihypertensive medications.  So adding more steroids seems, theoretically, to be a seriously bad idea until you think of this:  Her adrenal glands should be producing adrenaline (epinephrine) and other hormones to increase her blood pressure under stress, and they are not.  That 5 mg. of prednisone is telling her adrenal glands that they are not really needed right now, thank you.  So her body's secondary defenses (fever for example) are trying too hard to fight something that they are not designed to fight.

So they have two reasons to give steroids.  Therefore we are in the process of receiving "stress dosing."  This is my first experience with using hydrocortisone as anything but a topical cream for bug bites.  Babygirl is getting large doses IV every six hours.  I failed to ask "how long?"  Clearly we aren't going to make it home in time to go Christmas tree hunting this afternoon.  I'm homesick.


Saturday, December 1, 2012

Cool Runnings...

Yesterday Babygirl and I watched Princess Bride and Hotel for Dogs.  But yesterday she was feeling a little bit better.  They were ready to discontinue her antibiotics, an important step in getting her home, when she spiked up to 103.6 again.  I took the temperature and reported it to the nurse.  True to the spirit of the day, she came in, shoved the thermometer between Babygirl's chattering teeth and got a reading of 100.4, which is of no real concern.  She went back to giving report (because all potential disasters begin at shift change).  Since Babygirl had just been given a dose of Tylenol, I felt it was important to document that she really, really had a fever before it kicked in.  I rechecked it axillary (armpit).  103.4.  I went back to the nurses station, apologized for having a problem at shift change but insisted that she come back and redo it.  Yup.  Over 103.  This of course gets a call to the doc, and the antibiotics are reinstated before she's even missed a dose.

It was a long night.  Leg and back pain from the spinal tap.  Headache.  Fever and chills.  I got a couple hours' sleep a couple of times.

Today she's still on antibiotics.  Still running well over 103 whenever the Tylenol wears out.  Taking oxycodone for headaches and leg pain.

Neuro finally arrived today.  Turns out that no one ever actually formally consulted them.  The young lady who came had already read the chart, had a good grip on the story, the labs, the MRI and the spinal tap.  She is putting a plan in place that will keep trying new medications until the headache breaks.  She agrees that this fever episode likely has nothing to do with the headaches, and they will proceed as if it doesn't. 

It sounds great in theory.  Like the Jamaican bobsled team.  How it works in actual fact will be interesting to see.  So Babygirl and I are going to watch Cool Runnings today, the best anti-depressant movie that ever was.  Beating the odds and triumphing over adversity are themes that resonate for us today.

"Peace be the journey."