Friday, November 30, 2012

In an Old House in Paris....

It's been one of THOSE days.  The kind where something goes haywire first thing in the morning and then everything from there on follows suit.  It started with breakfast.

Last post I mentioned that breakfast may have been an error due to the upcoming procedures.  Turns out, it was.  When the resident came around after breakfast, she realized that there would only be 6 hours from meal to procedure instead of the required 8.  She promised to alert anaesthesia.  We didn't get word that we needed to change the time, so the nurse took us down at 1 o'clock as instructed.  Turns out that the resident failed to tell anyone about the meal error, so we were sent back to the floor - "Come back at three."

The beauty of being the 1 o'clock appointment is that you're the first of the afternoon.  Not true of the 3 PM appointment.  Babygirl was taken into MRI at 4.  But before they took her I was made aware that the spinal tap would be done by a resident (okay),  under the supervision of the anaesthesiologist instead of the neurologist ( less okay).  I didn't have time to contemplate that before she went to sleep.

After the MRI's and the tap, a nurse came to tell me she had been taken to PACU (where?).  She gave me the wheelchair we'd come with because all of Babygirl's stuff was sitting on it, and told me to take the elevator to the 3rd floor and 'go to PACU.'  The 3rd floor was deserted, and there were no signs anywhere that would give me a clue which of 4 different directions I should go.  I finally ran into someone who walked me there, and got me into the same waiting room where we'd waited during Babygirl's transplant.

By this time I was somewhere far beyond exhausted and maximally stressed.  The poor young man at the desk asked if I was okay.  WHY people ask if you are okay when you look like a grenade with the pin pulled is beyond me.  Why ANY employee of a hospital specializing in desperately ill children would ask ANY parent there if they are okay defies all reason.

I burst into tears.  I ranted about the fact that NO ONE told me I would need to be coming to PACU - why the hell not send me THERE to wait in the first place?  NO ONE came to talk to me about the MRI results or the results of the spinal tap.  And NO ONE told me how to get where I was going in a deserted building.

They offered tissues.  Ginger ale.  Tea. Sympathy.  And got me to Babygirl, who was just waking up, shivering in reaction to the meds.  We got back to our room where I let fly at the night resident about the lack of information.  About the fact that we STILL haven't seen a neurologist.  About the fact that the neurology team scheduled the damned tests and then didn't actually have anything to do with performing those tests.  About the fact that I never even for one second met the guy (gal?) who stuck a 6 inch long needle in my kid's back.

The rest of this evening has been trying.  Babygirl has just now drifted off to sleep after a lot of pain, chills, and tears.  Thankfully we had picked up a collection of Madeline books in the hospital library, and reading about Paris, and the soothing language of the stories helped calm her down and rest her.  I didn't need the book.  I have most of them memorized.

"In an old house in Paris that was covered in vines,
Lived twelve little girls in two straight lines.....
The smallest one was Madeline."

I suspect it will be a long night.  And somewhere along the way I misplaced my iPod.


Week Eighty-four - Riding the Coaster....

Waking up in a hospital shouldn't feel so normal.  And it shouldn't feel reassuring, but it does.  This past month has taken so much out of me, Hubby, and Babygirl that it almost can't be described.

Babygirl awoke looking fairly well, headache mild, alert and conversational.  She ordered breakfast and ate some of it (which may have been an error - she has procedures this afternoon and was supposed to be restricted to clear liquids), the first meal since soup and sandwiches Wednesday evening (most of which ended up on my sister-in-law's floor anyway).

Within an hour the headache was back full force.  The nurse got to see the transformation of Babygirl from happy teen to a child huddled under blankets to escape the light.  By the time the resident arrived, it was as if the Babygirl I love and miss so much had simply disappeared.  It gives me hope when she reappears.  It makes me weep when she leaves.  It's a roller coaster with 360 degree loops and an unstable track.

I don't know what to pray for.  I don't want them to find anything more wrong with her.  Or maybe I do - something that makes everybody say, "Oh, of COURSE! And all we have to do to fix this is (pick any simple safe procedure or medication) and she'll be ALL better!"

They took three urine specimens this morning to look for viruses I've never heard of.  They did the same sort of thing when they drew her blood.  They'll do more zebra and hippo hunting when they do her spinal tap.

Fundamentally speaking, I'm a control freak.  I freely admit it, and my family will happily (perhaps even gleefully) give you examples to support this.  There is nothing here I can control.  Nothing to hang onto, no strings to pull.  For all of that, I'm glad we are here.  But this coaster has no safety features at ALL.


Thursday, November 29, 2012

Hard Days Night.....

It is now 8 PM on a day that started yesterday at 5 AM.  I figure I've catnapped a total of about 90 minutes.  But we've accomplished quite a bit.

We saw two different ER doctors twice each, one floor resident 4 times, two nephrologists twice, two infectious disease specialists, two anaesthesiologists, and two ophthalmologists.  Counting any visit from any one doctor as being complete if we don't see them again for another two hours, we've had eighteen different doctor visits today.  (You'll notice that neurology is missing from this list.  We didn't see them, but every one of the above folks put in a call to them for advice so they've earned their money today anyway.) The last time the nephrologist showed up she asked Babygirl, "What is bothering you?"  Without looking up from my book, I replied for her:  "Doctors."

Babygirl feels like crap.  She still has fevers that come and go, mostly low grade, chills, headache and photophobia.  Imagine having a crashing headache, having some lunatic put drops in your eyes and then make you stare at bright, bright lights - over and over again.  At one point the ophthalmologist could see she was suffering, stopped and said, "Let me give you a break."  She shut the lights off, waited for Babygirl to compose herself, and then finished.  I can't tell you how proud I am of how little time it took for her to say, "I'm ready."

Ophtho says her eyes are fine and not contributing to the problem in any way.  This crosses a couple of (admittedly unlikely) things off the list, and makes some of the other things less likely.  Anaesthesia is going to use propophil (not sure on spelling and to tired to care).  It's a white liquid sometimes referred to as "Milk of Amnesia" that knocks you but is quickly reversible.  Unless your doctor is a total quack and leaves you unsupervised at home with it, as with Michael Jackson, it's pretty safe.  Nephrology is worried about the effects of the antibiotics on her kidney, but are afraid to stop them because her blood pressure is low and her pulse high (both improving slowly), both signs of systemic infection.  Infectious disease wants a bajillion tests, both on blood and spinal fluid, many of which will take a long time to produce information, and all involving scary rare stuff.

We are moving forward.  Once again we might end up not knowing what caused this infection, whether or not it is connected to the headaches, and what to do about them.  But I was asked more intelligent, thoughtful questions today about Babygirl's history, our family life, pets and travel habits than I have EVER been asked.

And remember that social assessment form?  The one the nurses admit they never look at?  I mentioned our pet pygmy hippo on one of them.  I doubt anyone will notice.

I'm hoping we'll get some sleep.  Thank God I noticed that they'd called in the respiratory therapists.  I fired them immediately - we do NOT need someone waking Babygirl every 4 hours to check on the asthma that hasn't require treatment in two years.


Fever and Toxic Waste......

Yesterday after work I ran home to discover that life had become a bit of a three-ring circus.  My mom, contrary to plan, wanted me to come and pick her up.  JuJuBee and Boo were there, hanging out with Babygirl.  The tutor had just left, and Hubby was heating up soup and trying to organize grilled cheese sandwiches.  I hadn't packed yet. 

I sent Hubby to get mom, set JuJuBee to making grilled cheese, Babygirl to Boo-minding and table setting.  I ran off to fold laundry, sort my meds, and pack.  We all came together at the dinner table at about the same time, so it was a good distribution of work to workers.

We arrived in Philly last night without incident.  I dropped my mom off at my brother's house and went on to my sister-in-law's, arriving around 10:30.  Babygirl had slept much of the way down, and at 11 complained of headache and nausea.  I gave her tylenol and told her to go to bed. 

After I'd spent some time catching up with my sister-in-law, hearing about Grampa Mike's final days and funeral, I went to bed and discovered Babygirl awake, and shaking like a leaf.  I took her temperature through her chattering teeth - 99.3. 

I frankly hate it when patients claim '99' to be a 'fever' because they are usually '96.'  But Babygirl usually IS 96, to the point where I was beginning to feel that the thermometer might not be accurate.  And she had just taken tylenol an hour earlier.  But it was the fact that the chill lasted nearly half an hour after that that made me call the doctor on call.

The response was as expected - the temp's not that high, keep an eye on her, call if it gets worse.

An hour later, it did.  I awoke from a doze to the sound of gagging and escaped the bed just as Babygirl tossed a grilled cheese sandwich and a bowl of chicken soup (along with about a gallon of some OTHER fluid) onto my sis-in-law's bedroom floor.  The stench was awe-inspiring.

Let me tell you that it doesn't matter what I do for a living.  I am not good at snot and vomit.  It's all I can do not to join in and add to the problem, and I suspect it's why God sent me kids who rarely vomit.  But I'm the parent, Hubby was at home (lucky dog), and I've got a clearly very ill little girl and a HUGE, noxious puddle of toxic waste to deal with. 

Her temp at that point was 100.6 - not high but over the official 100.4 fever definition.  I cleaned up, called the on-call doctor back, stuffed our contaminated belongings in plastic, our suitcases in the van, rinsed parts of Babygirl's hair (ewwwww) and made off for the hospital.  At 2:30 AM the 45-90 minutes at rush hour trip took 29 minutes.

At the ER her temp hit 103.6.  They've given her the major antibiotics and fluids, chatted with neurology about whether they wanted to do the spinal tap before they gave them, spoken with infectious disease, pharmacy, and nephrology. 

We are being moved to the floor soon, none the wiser about why she got so sick so suddenly (especially since she's barely left the house in a month) but well taken care of.

I guess we're going to miss our transplant team appointment at 9:30.  But that's okay.  We already know the kidney is fine.


Monday, November 26, 2012

How Can You Know....

How can you know for sure that your child isn't avoiding school?  The sunglasses were back on this morning, and she complained again of neck pain.  Don't get me wrong - she had a headache on Sunday, but it wasn't so bad that she needed the glasses, and she went to church.  She didn't appear to me to avoid the family gatherings, but she complains that school is 'too noisy.'  She rarely wakes up with a severe headache on a Saturday, or maybe she does and just takes her meds and goes back to sleep so I don't notice.

Certainly when the headaches started there wasn't a doubt in my mind that they were all totally legitimate.  There were too many odd complaints, and she looked terrible.  Heck, last WEEK she looked terrible. 

I don't know what it was about this morning that made me wonder.  There was a lack of the emotional intensity, perhaps.  But maybe it was apathy.  Maybe it was denial.

Maybe what I am hoping for in the back of my mind is that it's all fake, and therefore there is nothing at all serious to worry about.  As the countdown to testing continues, my anxiety is a noticeable presence in my life.  There's a big part of me that really doesn't want to know what is wrong.  If we don't do the tests, we can keep calling this migraine and not worry about it, right?  And if she's pretending, I can just get her a counselor and shove her out the door to school every day.

But I've had to stop using my favorite lotion because the smell makes her head hurt.  And she won't chew her favorite gum because the smell of spearmint makes her head hurt. It's only those two smells.  Who makes up stuff like that? 


When Crises Collide.....

A little over a year ago, I wrote about possible conflicts between Babygirl's needs and those of other family members (  That potential conflict worked out fine.  Curlygirl's Squeaker was born almost a month after Babygirl's kidney transplant, so I had no need to prioritize one child over another. 

Life moves on, and we've had to do more than a little juggling to meet everyone's various needs.  Overall, we are successful.  This week, not so much.

Last week Grampa Mike died.  He was an amazing man (, and despite the fact that he was not actually related to us by blood, he was Grampa to my kids.  I was able to visit him in the hospital last month, and did what I could to support my niece and nephew and my sister-in-law during the long weeks of his illness.  He was able to die at home, surrounded by family.  I will miss him.

Babygirl has to be in Philadelphia Thursday and Friday, so the plan was to travel down Wednesday evening.  But now there is a funeral Tuesday, tomorrow, and it is the one day of this week when we cannot possibly go.  Babygirl's routine dental visit has been delayed four times due to hospitalizations and low white cell counts.  Because of the transplant it is important for her not to develop any infections, and regular cleanings are important for her.  I'm more or less in the same boat, and have an appointment as well.  Her parent-teacher conference is tomorrow, between our two appointments, and I MUST keep up on school information.  To top it off, my Mom has a doctor's appointment as well.

My sister-in-law understands.  But I want to be there, for her, her siblings, and for my neice and nephew.  I want to honor Grampa Mike's life with the rest of them, and hear stories shared that I'll never have the opportunity to hear otherwise, and celebrate the man he was. 

If ever there was a time that I wish I could manage being in two places at once, this would be it.


Sunday, November 25, 2012

School Pictures......

One of the many problems with not attending more than one day of school a week is that you miss school portrait day.  Admittedly school 'portraits' are not usually particularly representative of our children's growth and beauty as WE see it, but it's still nice to have something current to send to the family at Christmas.

Babygirl left school early on picture day.  She missed school entirely on photo makeup day.  This year, for the first time ever we won't have a set of school photos of her.  She hates having her picture taken anyway - her body has changed so much in the last ten months due to the anti-rejection medications that she's become uncomfortable about it. 

But the beauty of having family is that people have talents that I lack and are willing to share them.  So my thanks and undying admiration go to my (local) sister-in-law.  She is a photographer of rare talent:  landscapes, portraits, animals, weddings, babies - she rocks them all.  And she took pictures of Babygirl that will allow her to see just how beautiful she really is.  This is the preview shot:

NO cropping, copying, or editing. Thanks!

Love this photo & not a fan?



Saturday, November 24, 2012

The Aftermath....

Nineteen people, including the babies, sat down for Thanksgiving dinner at my house.  We can seat ten luxuriously at our dinner table.  Twelve can eat in comfort.  Fourteen might be okay if we were a family of, um, smaller proportions, but we are big people of German extraction and we like our space. 

Each year we try to reconfigure things.  We've tried a kids' table (they hated it).  We've stretched tables through doorways into a second room (it works but no one in the other room can leave that room until dinner is over.  The weak bladdered among us must choose wisely).  This year we removed the coffee table, put a piece of plywood on sawhorses in the living room, added tablecloths and voila! We had seating.  We called it the 'young families' table.  All the young couples with babies fit there without difficulty, and Babygirl decided to add herself to that table.  That left the older families (with one nine year old) at the other table.  There was a clear line of vision from one table to the other, they physical separation being about four feet. 

Socially, it was an unqualified success. And we had one chair to spare.

Last night was Leftover Night.  I put most of the leftovers into crock pots to heat, and the rest into the oven.  It's a very low-stress meal.  I baked the two extra pumpkin pies, and at Babygirl's request, made some apple crisp.  All the deserts went on the table, and the rest were in the kitchen to be served buffet style.  Everyone who arrived early started with desert LOL!  We had ten people happy and fed, and spent the evening playing games and music.

Fitted in between, and for much of this morning, was the cleanup.  You can't have sixteen extra people in your house without creating a spectacular amount of trash, dust and dirt.  I haven't been killing myself, but I've still put a significant amount of time into the cleanup, as well as the usual household chores.

So for the rest of today, it's about me.  I'm going to get a pedicure, shop in my favorite store, and relax.  Don't look for me.  I have no interest in being found.


Friday, November 23, 2012

The Headache Break....

Babygirl awoke Thanksgiving morning with a headache.  It wasn't as severe as most of her morning headaches have been, and it didn't make her draw the 'black X of doom' on her headache calendar, but it was there.  Through the day she soldiered on, doing whatever tasks needed to be done.  But by dinnertime I noticed a change.  Her posture improved, her mood lifted, and she joined in the dinnertime banter and laughed - LAUGHED - without clutching her head in pain. 

After dinner as we were doing some cleanup, she looked at me and said, "This is the first time my head hasn't hurt in more than two weeks."  She was doing so well I let her go with Citygirl to see "Breaking Dawn part 2," a movie she's been looking forward to since meeting "Emily" and "Sam" at CHOP immediately after her transplant.  I was asleep when she came home, but she awoke headache free, and remained so until after dinner, when she started anew headache and took some Tylenol.

No headache for a total of about 26 hours.  It was like a miracle. 

Seven more days until the neurology testing.  Our insurance has authorised it.


Thursday, November 22, 2012

Week Eighty-three - All You Need is Pie.....

I love Thanksgiving.  Sure, there's some work involved, but you can do most of it in your pajamas (one of our foster kids used to call them "pajanamas").  Citygirl is here, so Babygirl has somebody to hang out with, which has cheered her up amazingly.  Which, it goes without saying, cheers me as well.

There are many things I love about Thanksgiving.  Family moments, the sharing of gratitude, good food and the general atmosphere of low-stress happiness.  And why is everybody happy?  Pie.

All you really ever need to make somebody happy is pie.  Think about it.  Is it possible to be totally miserable when the air is full of the smell of cooking apples and cinnamon?  Add the clove-and-ginger scent of a good pumpkin pie, the sight of meringue, the rich color of blueberries.  How can anyone resist a smile?  Put some real whipped cream on top of that - wow. 

Yes, I know that the smell of roasting turkey is amazing.  I know that good stuffing covered in gravy is SO good when it crowds in next to a sweet potato casserole.  But we all know that the whole time we are eating all that deliciousness, we are still looking forward to pie.

So when I accidentally doubled the pumpkin pie filling recipe and discovered I had enough for FOUR instead of two, making it possible for me to make two fresh pies for leftover night?  It was like an extra helping of free happiness.

So happy Thanksgiving to all my friends and family.  I wish you peace, gratitude, good health - and pie.


Wednesday, November 21, 2012

The Value of a Smile....

Babygirl came down this morning without sunglasses, and gave me a hug and a smile.  Her head still hurts, it always does these days, but it was to a tolerable level.  There was no need to put the big black X on the headache calendar we are keeping for the neurologist. 

I haven't seen that smile in two weeks. 

I'm grateful. 


Tuesday, November 20, 2012


I raise girls.  Crying, tantrums and emotional storms are a part of the landscape.  Girls in their teens are by nature living on the brink of constant hysteria, be it of the happy kind (OhMerGerrrddd he LOOKED at me!!) to the angry kind (OhMerGerrddd SHE looked at HIM!) to the my-life-is-over kind (fill in the blank here with any and all imaginable apparently irreversible crises).  The feelings are real, and the intensity frightening, however laughable the circumstances appear to the long-suffering adult helping them deal with the crisis du jour.  But in my experience, girls thirteen and up tend to keep their true sadness to themselves.  They share some of it with peers, and display symptoms of it to their parents, but the real crying occurs in the lonely privacy of their rooms, in the dark of night, alone.  I know this.  I was a girl once.

So when a girl cries in front of me, I take it seriously.  Be it tears of rage and frustration or pure grief, my girls have gifted me with the privelege of holding on - holding them up, holding them back, holding their hearts.  From skinned knees to baby blues, tears matter, and my job is to be there when they let me.

Babygirl came downstairs this morning, wearing (the G-d freaking I HATE them) sunglasses.  I was focused on household budget, paying bills, writing checks, a letter to one of our Compassion kids, the usual.  But there was something about the set of her shoulders that caught my attention.  Slumped.  Sad.  Hopeless.  Even without being able to see her eyes, I knew she had descended to some place that needed rescue.

Paperwork be damned.  I pulled her to a couch and just held her.  We cried together for amost fifteen minutes, letting out fear, rage, and sheer discouragement.  She said absolutely nothing.  And then she went back to bed.

Lord, please.  Please.


Monday, November 19, 2012

Never the Same One.....

We work hard not to repeat mistakes.  It gives us so many opportunities to make new ones.

Babygirl's Cellcept is now  in a liquid.  Two months ago I had to run to a pharmacy 70 miles away to get this new prescription, and it must be discarded 60 days after it is reconstituted from powder to liquid.  So I planned WAY ahead this time.  Several weeks ago I asked for an actual written prescription for it, so it wouldn't get faxed to a pharmacy, ordered and reconstituted before we need it - one bottle costs about two grand and could last 70 days if we didn't have to toss the rest.  I took the prescription to the pharmacy so they could order it and got them to swear they wouldn't add the water until the day we picked it up.  I put the date on my calendar to call and ask them to ready the script.

And I forgot to call.

No worries, really.  Sixty versus sixty-one?  What are the odds that something terrible will happen anyway?  I called a day late and told Hubby to make sure to pick it the next day, which happened to be Friday.

Hubby took this very seriously.  He was the first one in the pharmacy when it opened, picked up the Cellcept and brought it home.  But when I sat down that evening to put it into the syringes, I discovered when I shook it that I had a bottle of dry powder. 

I must admit I got a bit loud.  But Babygirl will confirm that I didn't actually use any bad words.

Our pharmacy closes at six on Fridays.   It was nearly seven when I made this discovery.  And our pharmacy doesn't open until Monday morning at nine.  I didn't have any sterile water to add myself, and I had nothing I could accurately measure 175 cc's of water in anyway. I needed six more doses of medication.  Thank God that a bottle COULD last 70 days! 

Not that I was utterly without options.  I still have the pills, but they are 250 mg. and she is supposed to take 160.

Hubby went back to the pharmacy this morning.  I failed to ask him what they had to say about their failure to add water, or what he said to them.  I'm not sure I want to know.


Sunday, November 18, 2012

Giving Thanks.....

The weekend before Thanksgiving has its own concerns, unique to itself.  How many people are coming?  Do we have enough chairs?  Who is bringing what, and when are we going to sit down and eat?

I think we have only fourteen this year, but I am notoriously unable to count.  No matter that we count twice, and then a third time, and then set the table with one extra place setting, we are always one short.  I have no idea at all why, or how that's even possible, but it happens every single year.

Our guests range in age from under one to over 90. There is always homemade music, homemade cranberry sauce, and homemade pie.  There are usually two turkeys (one smoked and one roasted) and one ham (Curlygirl HATES turkey).  Dinner begins with a round of thankfulness, each of us telling what we are most thankful for.

One memorable Thanksgiving my Aunt Mary (rest her soul) silenced the room by declaring that there wasn't one single thing she was thankful for!  In rebuttal, we now have a sign hanging in the dining room that says, "There is always, always, ALWAYS something to be thankful for!"

When I began contemplating what I am thankful for I had an 'Aunt Mary' moment.  After all, Babygirl is suffering daily and we don't know why.  And I have nothing to offer her to make it better - nothing at all!  My level of frustration with this is intensely high. 

But this intense level of frustration should in no way make me so ungrateful. 

So here is the start of list of things I am grateful for:

Babygirl has a kidney that works, and isn't on dialysis anymore.
Financially we are much more stable than we were at this time last year.
My family is wonderful, supportive and generous.
(My family includes a large number of people I'm not even related to!)
I have a home, food, clothes, and a job.
I live in a great neighborhood, with great neighbors.
I love turkey, and I'm going to get to eat it for a week.

Eleven more days until the neurology workup.  I'm grateful that it's scheduled.


Friday, November 16, 2012

Week Eighty-two - Thirteen More......

The holidays are coming.  Ordinarily, I'm a holdiay kind of gal.  I look forward to decorating, feeding people, opening my home.  I love the music, the optimism, the sparkle.  I love the intense competition that is Black Friday. 

But I'm tired.  Babygirl's pain and sadness have colored my world to a fatiguing shade of grey.  I keep putting one foot in front of the other, and I encourage her to do likewise.  I cradle her in my arms and let her cry.  I keep her medications up-to-date and make sure she understands what she can do to help keep the headaches at bay.  I've bought alternatives to the food she loves but cannot have right now.

Last night we watched the new episode of Glee.  It's her favorite show, and the only one I allow her to stay up late to watch.  There were sad scenes, and there were funny scenes.  In one moment we were both laughing out loud, and in the next she was clutching her head and saying that laughing made her head hurt more.

That was about the most depressing thing I've ever heard.

Thirteen. More. Days.


Wednesday, November 14, 2012

The New Countdown.....

I got a call from neurology today confirming the 30th as the date for the testing.  It was reassuring to hear that the neurologist himself had called his scheduler to make sure things were all set, and that he asked her to check with me to see that things were not deteriorating further.  I'm to call immediately if that happens, and I have to say it's nice to hear someone say that they are concerned and paying attention. 

Fortunately we do not have to go down for a separate anaesthesia evaluation.  She was assessed by the sedation team in August for the biopsy that never happened, so she's up-to-date with them.  I'm considering calling nephrology to reschedule our visit for 10 days early to match up with this.

All that's left for me to do is to start a new countdown: 15 more days. 

Is there anybody besides me out there who is utterly astonished by the fact that Thanksgiving is a week from tomorrow?  I have't bought the turkey that I should start thawing today.  I don't know who's coming, haven't sent out the engraved invitations, and haven't gotten any up-front offers to help with the meal. 

Ah, well.  "Ye have  not because ye ask not."  Time to get out the engraver.


Monday, November 12, 2012

Neurology for $400, Alex.......

We met our neurologist today.  I like him.  He listened without interrupting, spoke directly to Babygirl when appropriate, and didn't rush to make a final diagnosis without some extra information.

We continue to carry the diagnosis "Headache NOS" ('not otherwise specified' for those of you unfamiliar with medical code terminology).  He ordered an MRI of her brain, an MRI of her cervical spine, and (not unexpected but YIKES anyway) a spinal tap.  He did not feel that it was emergent, so we came home.  No admission today, yippee!  I guess packing the extra undies worked.

All of these things, in the absence of an emergency, require prior authorization from our insurance.  Who knows how long that will take, but it was less than a week for them to authorize her kidney transplant (and months to get it as we all know!).  Once authorized, they plan to schedule them all for one day.

Each MRI takes a full hour and requires that she lay perfectly still the entire time.  And the spinal tap?  On an adult it's a procedure under local anaesthesia.  For a kid, sedation is advisable.  Frankly I think she'd be able to handle the tap more easily than the MRIs. 

Before I even arrived home I had a phone call from the sedation team nurse.  She had the office notes from today's visits, and also the sedation records from Babygirl's kidney biopsy last May ("This is odd - they say she's VERY ticklish."  Um...yeah.).  It was her opinion that Babygirl's weight gain and increasing body mass index put her at risk for unsupervised sedation in an MRI machine.  She feels her airway could relax enough to allow her to stop breathing, so she is recommending full general anaesthesia so she can be ventilated to protect her airway while she's out.  So now the co-ordination is between general anaesthesia, MRI and the spinal tap area (?). 

This could take a minute.

Meanwhile, they have given us the Migraine Diet to follow.  No chocolate (including hot chocolate or chocolate milk), peanut butter, pizza, cured meat (ham) or Chinese.  There's more, but those are the ones that hurt.  I won't be able to serve quiche or anything made with aged cheese.  Pork is limited, no sausages, hot dogs, cold cuts.  Some of these things overlap with the post-transplant diet, but many are things she couldn't have while on dialysis that she's been very happy to have back.

This kid just can't seem to cut a break, but at least they are finally working on it.


Sunday, November 11, 2012


We've waited an eternity to see the headache specialist.  We've arrived safe in Philadelphia, and will travel to the hospital in the morning to meet, as usual, with the transplant team.  And we'll finally meet the neurologist.  He probably already thinks I'm crazy - we've bugged the living daylights out of him already.

We've pinned a lot of hope on this visit.But walking in and expecting that she will be headache-free instantaneously is clearly unrealistic, however much it would meet my fondest dreams.

But aside from knowing not to expect immediate freedom from headaches, I really have no idea WHAT to expect.  MRI?  Better neck images?  Extra blood work?  Admission?

I brought extra undies just in case.  I figure if I'm ready to stay a few days they'll be more likely to send us home.  It's a karma thing.


Friday, November 9, 2012

I Fixed a Roof.....

Each year when we go on Appalachia Service Project mission trip, we plan some sort of song to introduce ourselves to the other groups.  We've used tunes from pop, country, and once even the theme from Gilligan's Island.  Other teams do the same, and it breaks the ice on the first night when three or four churches from different states are coming together to do home repairs for folks who can't afford to do it themselves. 

Last week I got a song stuck in my head (thanks to Babygirl's Glee reruns).  But it was a good, rhythmic song to walk to, and while I was walking I started a rewrite for our next mission trip.  It's totally silly, and my apologies to Katy Perry.

I Fixed A Roof

This is not what I had planned
(I hate heights, I'm not good at ladders!).
What are these tools here in my hand? 
I've never used a drill or a hammer!
It's not what I'm used to
Just had to climb right on
It's curious what I'll do
With the right intentions!

 I fixed a roof and I liked it
 to keep someone warmer, safer, dryer!
I fixed a roof just to try it
I hope ASP will like it!
It seemed so wrong, and felt so right
I think I'll sleep good tonight.
I fixed roof and I liked it - I liked it!

This mountain fell into their yard
now you give me a post hole digger!
I have never worked so hard
could railroad ties be bigger?
It's not what I'm used to
Just had to pile it on
It's curious what I'll do
With that big sledgehammer!

But I built a wall and I liked it
to keep someone warmer, safer, dryer!
I dug a ditch and I liked it
muddy, sweaty, hot and dehydrated.
It felt so wrong, but it seemed so right
I'm sure I'll sleep great tonight!
I built a wall and I liked it - I liked it!

Mission work is so magical
We help, they know God loves them so!
Hard to resist all those Devos...

I ran out of steam here.  I'll post in on the mission team site and take my lumps about the horrible meter and bad rhyme.  But it took me outside myself and made me remember our friends in West Virginia.  With all the snow from Hurricane Sandy I'm guessing we'll have a lot of roofs to fix.


Thursday, November 8, 2012

Week Eighty-one - Redefining Eternity....

As we continue the countdown to Monday's upcoming visit with the headache specialist, I begin to understand the concept of eternity. 

Eternity exists outside of time.  My clocks still tick of seconds and minutes, and they are all theoretically of the same length, one compared to another.  But think about how time passes while you sleep.  There is very little sense of time passing, yet you fall asleep in one day and wake up in another.

This wait is the opposite of that.  Watching your child suffer takes you outside of time and into a new, eternal dimension that makes each second expand exponentially into something that touches on forever.  Everytime I see those sunglasses, time slows, and slows, and slows.  We go through what is now a nearly daily routine - check temperature, check blood pressure, use the one-to-ten pain scale to evaluate neck and head pain.  I check for true signs of meningitis DAILY, and sometimes more than three times in a day.  It makes me late for work.  It makes my heart pause whenever my phone rings.  It makes me crazed and fearful.  It makes me feel helpless, and alone.

Babygirl and I have more or less reached a point of apathy.  We go through the motions, take medications, push fluids and rest.  And we wait.

Four more days. 

Perhaps Hell is like this.  Eternal helplessness.  Eternal anxiety.  Eternal loss of hope.  We don't need real flames to feel the burn.


Wednesday, November 7, 2012

Grateful for Freedom...

I'm incredibly grateful that I live in this country.  For all of our flaws, it remains, and will remain, the best place in the world to live.  Despite the incredibly divisive pre-election craziness, I have nothing but good thoughts about the future of our nation.

For the record, I voted for President Obama (for the second time).  I clearly have a lot at stake.  Without the Affordable Health Care Act, Babygirl's future is even more uncertain that it currently is.  My work serving the poor is more promising in this environment.  I'm not looking for Platinum Card Club/first-class-seat medical care for everybody.  But there should be room in coach for everybody.  Heck, I'll settle for Greyhound care as a basic start. 

I'm hoping for a gentler, more tolerant future for my kids.  As a child who had to learn that the N-word was not appropriate anymore, I want my kids to learn that the F-word ('faggot!") is not appropriate either.  I want equal rights for everybody.  I want my 20-somethings to have a chance at decent work for a living wage. 

I pray that both political sides of our nation come together to work for the common good. 


Sunday, November 4, 2012

Lazy and Peaceful.....

It's nice to have a Sunday with nothing really to do.  After Sunday school and church I came home and changed into my jammies.  Oh, I did a couple of loads of wash, and paid a couple of bills, but mostly I sat reading and snacking (and at least some of it was fruit LOL).  A couple of glasses of wine finished my evening.

Citygirl is here and she did all of the cooking yesterday for a nice family dinner, and there is chicken soup simmering on the stove for anyone who wants something nutritious to eat - I made Babygirl go outside and pull up some carrots for the soup earlier.

Today's headache was a kinder, gentler headache.  It started early in the morning and went away in less than two hours by itself.  Here's hoping the steroids have kicked in and we'll have a more peaceful week. I'm crossing finger and toes and lighting a candle. (I probably should have done all of that in the other order.)

Eight days until neurology give us an opinion.


Saturday, November 3, 2012

Curing Migraine....

Two years ago when my migraines suddenly took over my life, I got a LOT of suggestions for things that would improve the situation.  Now that Babygirl is riding in the same boat (I HOPE it's the same boat - I really don't want anything worse than migraine!) I am getting a ton more.

I'll do my best to cover some ground here. 

First, I DO believe in massage, manipulation, chiropractic care and so on.  I have had manipulations done while I was having migraines.  It worked beautifully.  But it didn't stop the headaches from coming back, and it is not a skill a lot of people have.  Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency. 

With Babygirl, treatments that involve having someone touch her are difficult.  As a toddler we discovered that she as some Sensory Integration Dysfunction.  She was extremely sensitive to clothing, shoes, socks and so on.  I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material.  She wears fairly tight camisoles under her tops, and I think for the same reason.  She is so severely ticklish that CHOP anaesthesia has made note of it.  She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated.  She HATES back rubs, pedicures and shampoos at the hair salon.  However effective these treatments might be for her, she cannot, oddly, tolerate them.

Various herbs and natural products have been suggested.  Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them.  Topical peppermint oil seems to make her worse, while it seems to make me feel better.

Someone suggested sports drinks like Gatorade to help increase potassium.  Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal.  But we are also forbidden to use sports drinks.  The salt/sugar/potassium combo is not at all good for people with kidney disease.  It is true that hydrating her helps the headaches get better.  We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth. 

As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list.  I have, banging around inside my head, my own paranoid and worrisome list.  Frankly, it's times like these when it truly, truly stinks to be a doctor. 

There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras."  For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite.  That being said, I've had the patient with the lung parasite.  Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus. 

My head is full of zebras, a few Tommy gazelles and a river full of hippopotami.  Babygirl already possesses one zebra disease.  This time I want a horse.  Migraine would work for me.  That, at least, won't endanger her life any further than the zebra she's already riding.


Friday, November 2, 2012

What I Learned In the ER.....

This morning, more of what we've gotten sadly used to - a bad headache, nausea, light and sound sensitivity, and the added bonus, neck stiffness and pain.  I gave Babygirl her headache meds and called CHOP, getting the same on-call nephrologist I got last week. 

Like me, she's concerned about the neck pain. It's not a typical migraine symptom, and it's a new player in this game. She called neurology.  They can't move up her appointment.  She advised me to take Babygirl to the local Emergency Room to try, once again, to break the headache, and to have them call neurology for further advice.

Sigh.  But if you ask a question of an expert, you can't always expect to get an answer that you like.  And generally, you are a fool if you disregard such advice.  So we went.

To give our ER as much credit as possible, I have to say they were overwhelmed.  We went to a room pretty quickly, but I could hear, over and over and over again, overhead pages asking the doctors to take calls from incoming ambulances.  And what I heard wasn't "We're coming in with some moron with an ankle sprain" but "we have an 82 year old with a heart rate of 160 and dizziness." 

We had an awesome nurse.  She's the same one who rode all the way to CHOP with us in an ambulance last spring.  The doc, not so much.  He popped in, barely stayed long enough for me to point out that yes, it was only a headache, but the nephrologist told us to come in because of the neck symptoms and that she recommended imaging of Babygirl's neck.

I don't think the imaging she was hoping for was a simple neck x-ray, but that's what we got. I'm guessing she was hoping for a view or two of the spinal cord, but hey.  We were there from before 9 AM until 3:30 PM.  She got IV meds shortly before 11, more than an hour after we were told that that was what the plan was.  We were discharged without being told the results of bloodwork or xrays. I cried in front of the nurses and got ugly with the doctor.

So what I learned in the ER this morning is that I'm not going back.  I'm not asking again until I see the neurologist ten (LONG) days from now what it is that is causing this pain, or what anyone plans to do about it.  I'll give her the meds we have, keep her home from school if she has a headache, and ask everyone I know to pray for us both.


Thursday, November 1, 2012

Week Eighty - Whining....

Babygirl got a lot of loot last night considering she was really only up for about two blocks of candy looting.  But the grandbabies came along, and their inability to go the distance spared me the necessity of making her be the one to "give up."

She awoke this morning because her neck hurt.  The light hurt, her head hurt, but her neck was the prize winner this time. 

The neck pain frightens me.  Truly, truly truly scares the bejeepers out of me.  No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees. 

I don't deal well with fear.  I don't cope with helplessness well.  I suck at patient watch-and-wait crap.  I hate to see her cry because once again she cannot go to school.

This sucker was still hurting her some when I got home from work.  She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt. 

I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I  spent most of the rest of my day whining.

It's not pretty.