Sunday, June 30, 2013

Benign Neglect.......

It amazes me that this blog, started in stress and desperation, could become so 'everyday'.  When I reread the first few months' worth of posts, I can clearly see that I have become a different kind of person.  My reaction to Babygirl's last two sets of labs really prove that to me.

Two years ago any minor change in numbers had me on the edge of my seat; no, on the edge of my sanity.  One year ago while away on the mission trip I was crying daily, equal parts desperate to get news and terrified of what the news would be. 

I'm not entirely sure if it is that I have matured or have grown numb. 

Babygirl and I have been frequently to our favorite amusement park.  It's on our way to and from the hospital in Philly, and it's a grand place to stop and take a travel break.  But on a recent trip Babygirl observed, "You know, it isn't quite as much fun when you come so often."  She has a point.  We've ridden those same five rollercoasters about a hundred times in the past two years.  And while your stomach still drops and your hair still stands on end, there is a familiarity to it.  This drop.  That loop.  One more flip.  And it's done.  Next! 

The kidney transplant has begun to feel a bit like this.  It's not that I think that nothing worse can happen.  I know all too well that that is true.  There are, after all, new and untried coasters out there - just ask my recently whiplashed neck!  It's more like driving on familiar hills.  After a while you don't feel the stomach dropping dips or the g-force of the curves because they are simply normal.  I think my adrenal glands have finally accepted that they don't need to dump every ounce of adrenalin they possess into my bloodstream every single time Babygirl's creatinine blips upward. 

So the blog gets fewer posts.  And many posts have nothing to do with transplantation, kidneys or hospitals.  And more to do with 'real life' and the living of it. 

I can live with that.


Thursday, June 27, 2013

Third Year, Week 10 - Settling Into Summer....

There is, despite our daily busy-ness, a gentleness to summer.  Heat slows us down and quiets us a little, I think.  The extra daylight feels like more time - time to swim, time to grill, time to hang out.  It's lovely, even when it rains or looks cloudy!

Babygirl is still suffering, though.  Her headaches are harder to ignore without the demand of a rigorous schedule of school or teaching.  And I think the summer desire of every teenager to stay up late and sleep in is playing a role in the uptick in headache frequency.  And her lack of local play buddies is keeping her too much indoors.  Last summer there were kids in the pool all the time.  This summer, I have to drag her in.  She was in school so little that she had very little time for socialization.  And she is, by nature, shy and a bit retiring.  What made her active in the past was a houseful of busy sisters and a good neighborhood friend (whose move to Florida makes her sadly missed). 

When Citygirl was little there were nearly a dozen kids within a  one block radius who were near to her age.  The fact that the vast majority of them were boys only expanded her sports horizons!  She was, and remains, gregarious and outgoing, the center of every photo that has ever been take of any group of her friends.  JuJuBee, Curlygirl and Bella had each other and their own school friends.  Babygirl had Littleman and Gigi, but they left, and she really only had two neighborhood kids her age, and both have moved.

I'm not sure what, if anything, I can do about this.  I've suggested babysitting, becoming a local Mother's Helper, volunteer work..... but basically, if I'm not going with her, she doesn't want to go.  And the unpredictability of her health clearly makes it tough to make her participate consistently in anything.  She's not a fan of sports - her vision issues make ball sports pure terrifying torture.

I'd be open to suggestions for how to help her more!


Friday, June 21, 2013

Third Year, Week Nine - Reprieve......

Babygirl's local labs from yesterday were excellent!  Creatinine back down to 0.9, neutrophils doubled to 1,800, acid slightly less pronounced. She'll be starting a new medication to combat that today.


We went to the Chinese buffet last night for the first time in well over a year.  And we had dessert at Sweet Lips, a new local ice cream shop. 

My mom will be home from the hospital today, at least partially recovered from whatever infection she had.  And I finally got a call back on my tests.

The EEG is clear, no evidence of seizures.  The MRI, on the other hand, shows new areas of damage from the migraines.  My neurologist is pushing me to be more agressive with treatment meds (immitrex in this case) but not increasing prevention meds (because they have all, thus far, been more or less intolerable). 

And we are entering summer with the best news we could ask for:  Babygirl's passport has arrived!  Let the Paris planning begin!


Tuesday, June 18, 2013

Acid Trip......

The preliminary results on Babygirl's bloodwork on Monday showed a fairly unhappy kidney and a recurrence of her neutropenia.  Her creatinine is 1.2, up from 0.9.  Her neutrophil count is just over 900.  Both of these things are of considerable concern and have no real explanation.  But more than that, Babygirl is retaining acid.

Acid-base balance is one of the major functions of your kidneys.  The human body operates in a very narrow pH range, prefering to rest at 7.4.  At a slighltly more acid pH of 7.1 catastrophic stuff starts to happen.  Acid buildup is one of the reasons people with severe infections die - acid is produced by the infective agent (and as a result of damage from the infection) at a rate beyond which the kidneys can clear it.  It messes up cardiac function, liver function, brain function and, of course, kidney function.  But in Babygirl's case the cause of the acid buildup is not something exogenous like an infection, but her endogenous kidney function (or lack thereof).  She is producing a normal amount of acid (we assume) but her kidney is falling behind on cleanup, or getting rid of too much of something else needed to maintain balance.

The easy solution is to give her a base (in this case, some bicarbonate) to counteract the acid.  It's a simple solution, but it doesn't get to the heart of why her kidney has decided to retain acid in the first place.  She had this problem for a short while after the transplant and it righted itself after a month or so of bicarb.  They are waiting until after today's team meeting to let me know whether or not they want do do this.

I personally do not have a really good grip on how bad this is or what it means.  Since it already happened once and resolved, I'm not getting too worked up about it.  Yet.

The neutropenia is another issue.  There really is no particularly good reason for it, since most of the medications that cause this have been discontinued.  Babygirl was complaining of a sore throat for a day or two before her visit, and some viruses can cause neutropenia, so they are doing a recheck on Thursday morning, along with a repeat on her creatinine to see if the whole thing is just a viral blip instead of a trend.

Fortunately for us it was Dr. A who was on yesterday morning.  She's a bit more laid back, worries less, and tends to give things time to develop.  She even told us that some of Babygirl's dietary precautions can be eased if her neutrophil count comes up a bit!  I think Dr. B could have considered admitting us.

Babygirl feels fine.  And she looks fine.  So it's a good day.


Monday, June 17, 2013

One Ten AM......

I'm sitting in the dark of my sister-in-law's house, listening to her snore softly as she sleeps.  I went to bed at 11, late for me, but still rather not-sleepy.  Not-sleepy evolved to not-asleep to wide-awake.  So right now I'm avoiding a middle-of-the-night snack by chatting with all of you.

I have never pinned down any specific reason for nights like this, but I've grown less frustrated by them.  I've found that the worst thing that anyone can do while they're lying awake for no good reason is to get really, really mad that you are lying awake for no good reason.  Sending adrenalin shooting through your veins at two AM does not improve your odds of sleeping.  At least half of the time Sleep will come if you ignore it, letting your mind wander off onto other subjects. 

Not tonight so far. 

Oh, my mind has wandered.  Off to Paris, back to my hometown, around my imagination, through a cloud of cigarette smoke (yeah, that again) and back again.  But you hit a degree of alertness that lets you know that no matter how hard you try to engage Sleep in a game of peekaboo, you are not going to win.

I don't think I'm overly concerned about Babygirl's appointment tomorrow.  My brother asked if she was being admitted.  And I told him that it is a possibility with every single doctor's visit - because that's the way life is for transplant patients.  But I think I've adjusted to that mentality as well as anyone can and it doesn't cause me any particular anxiety.  It's not being in an unfamiliar place - this is as much home to me as my own bed after all this time. 

Maybe it's because I slept this morning. 

Yesterday's party was epic.  Lots of interesting people, lots of food, and lots of Scotch.  Yeah, I'm that kind of girl.  Wine is okay, beer is disgusting, but whiskey is just proof that God wants us to have a good time.  I fell into a drunken stupor asleep last night before 11 while the party was still underway.  I woke up at 6 as usual, tried to have breakfast, and realized that I was still not capable of walking a straight line.  So I took three Advil, staggered back to bed and didn't get up until almost 11.  And although it was awesome sleep, I'm thinking that if I want to drive to CHOP legally in the morning I shouldn't consider that option tonight.

Ah, well.  There is always Stumble.  And YouTube.  And I may have to give in and have that snack anyway.


Sunday, June 16, 2013

Third Year, Week 8 - Low Energy.....

It's not that I haven't had any thoughts interesting enough to blog about.  It isn't that I couldn't squeeze at least two more stories out of Citygirl's and my incredible weekend.  It certainly isn't due to a lack of laughter, good books and good workmates.  It isn't even a sign of fatigue or depression.

I'm in a low energy cycle. 

I think everybody has them.  You have exactly enough energy to get through whatever it is you are doing at the moment, and not one shred extra.  You aren't tired or sad, or listless or bored.  You just don't have any reserves.  If someone else suggests something entertaining you're happy to go along, but not energetic enough to plan something on your own.

Low energy cycles are weather-driven to some extent.  Our late spring has been cool and rainy.  I WANT to plant the flowers I bought 3 weeks ago, but while I might have enough oomph to plant them on a sunny day, planting them in the cloudy cold rain is just too much work.  I have enough energy to finish a book but not enough to look for a new one.  I can work without praying for the day to end early but not hang out and dust my desk.

I've had a very good week overall, and so has Babygirl.  She made it to four days of school.  Hubby and I played a game at least one evening.  I've skipped the 'hard' Sudoku and done a half-dozen 'medium' ones.  I haven't wasted much thought about the results of last weeks' tests, and haven't heard one way or the other. I packed for Babygirl's doctor visit tomorrow as if we are staying a week, like always, and included some of the lovely free samples from the spa.

I enjoyed my sister-in-law's "I Got My Son Through High School" celebration, meeting all of her friends at long last, after hearing about them for years.  I took the opportunity to thank them for all they did for Babygirl and I, sight unseen, over the past year and a half, and all they did for my sis while her father was dying last fall. 

Maybe it isn't low energy.  Maybe this is what it's like to feel relaxed and unstressed.  I'm not sure.  I mean, there must have been some point in my life when I was not stressed, right?  I just don't think I can quite remember what it feels like!


Tuesday, June 11, 2013

Another View of Survival.....

And now a break from bragging about my wonderful weekend.

Babygirl has been lucky enough not to get much air time on the blog lately.  She's been attending school at least three out of five days, and the headaches aren't unbearable on the other days.  In fact, I think she missed a day recently for the ordinary excuse of cramps.  Good job, Babygirl!

But I am always checking out other blogs and websites that might give me insight into what she is going through, or help with what I am going through.  I've become a follower of this blog:

In this particular post, The Kidney Boy speaks poignantly about his disease, about how he can't really forget the past and move on because he misses the young man he was before illness changed him.

I get it.  Not from the perspective of the sick, but from my perspective as a parent.  I miss the parent I once was - the one who could reasonably expect my kid to outlive me.  The less vigilant, more relaxed mama who had time to waste worrying about all the wrong things, like where to spend vacations and whether we wanted to eat out once or twice this week. 

Babygirl is so young, I sometimes wonder if she'll clearly remember not being sick.  Not worrying about what she could or couldn't eat in a restaurant.  Not enduring the frustration of a pill schedule, headaches and loneliness.  I do, and I grieve for her.  And I miss, so desperately, that carefree easygoing child.  I took it all for granted.  All of it. 

Not anymore.


The Upside of Whiplash.....

Citygirl's unexpected invitation to spend the weekend at a posh resort (courtesy of one of her world wine tour scholarship buddies) was welcome, if untimely.  Our weekends this month are jammed with activity!  But since Citygirl is trading in her glamorous life for Birkenstocks on the west coast, I jumped at the opportunity to spend some time with just her.  The last time I did was over 3 years ago on a whirlwind Disney-on-your-birthday weekend that was as exhausting as it was exciting.  This was a whole different thing.

Citygirl and I approached the city of Hershey from slightly different directions and met up a few miles outside of our destination.  Since she has a GPS I agreed to follow her from there.  GPS's are interesting.  They don't always pick the most efficient route, but you do see some very lovely things!  The road we came in on was one of the few I've been on that made MY stomach drop every 10 seconds.  It was quite entertaining.

Checking into the hotel, we were offered a choice of 'Milk or Dark chocolate?"  We were given room keys, a property map (yeah, it's that big) and an envelope containing two $25 discount cards for Polo Ralph Lauren at the nearby outlet mall and two free tickets to HersheyPark, Hershey Gardens, and The Hershey Story Museum.  Our room overlooked the amusement park.

Following our brief whiplash-inducing visit to the amusement park (and the fabulous thing about free tickets is that you don't feel at all bad when you don't get every single minute out of them!), we returned to the hotel and discussed pools and hot tubs, discovering that Citygirl had forgotten to bring a bathing suit.  We checked out the bathing suit shop in the hotel ($350 for a swimsuit?  I think not.) and decided to head for the outlet malls.  Using our $25 card got her a lovely suit, deep purple, outlet priced at $90 for $35 (yeah, the math doesn't work.  Turns out the suit was also on sale!).  I found a very nice lightweight cardigan and got it for $4.  Yeah, a Polo sweater LOL.

We went back, hung out by the adults-only pool (one of three) and let the poolside wait staff bring us ice water, and ultimately some iced Irish coffee. 

I  have a sunburn.  Citygirl has tan lines.  The day was an unqualified success and we haven't even had dinner yet.  And we'd have wasted much of it on roller coasters if I hadn't hurt myself a little on the first one.  Yup, whiplash isn't always a bad thing.


Sunday, June 9, 2013

Slathered in Chocolate.....

There isn't much bad that you can say about a day that began with a long soak in a tub followed by a cocoa massage.

Given that the Hershey Hotel ( offers peppermint scented shampoo and lotion, this made me smell a bit like a peppermint patty. 

Amazing weekend with Citygirl.  We fit in a week's worth of relaxation.

And FYI - if offered the opportunity to go on Skyrush, give it a moments' pause.  I'm a huge coaster fan, but this one knocked me out of the park (literally) with whiplash.  What you can't see here ( is that one person is hanging off each edge of the coaster (which is kind of cool), and there is not bumper system to keep your head in one place (which is totally not cool.  I felt my neck go 'crunch' at the first corner and had to fight the rest of the ride to keep my head from flying off.  But hey, cocoa massage makes everything all better).

More later.


Wednesday, June 5, 2013

Third Year, Week Seven - Smelling Smoke......

"Do you smell smoke?"

It's been two and a half years since my brain went nuts and sent me into a migraine tailspin.  The original symptoms were so bizarre as to defy description.  Smells were incredibly noisy.  Light warped and bent.  Colors turned themselves inside out.  I smelled smells that didn't exist and felt soda bubbles tickling the roof of my empty mouth. 

"Somebody is smoking out there!"

For the most part the headaches are down to one a month or less.  Typical visual auras (blank spots or sparkles) are less often.  My original pre-tailspin auras of dysgeusia (nasty taste) haven't happened in years.

"What do you mean, the windows are closed?"

But since the tailspin, off and on, I've had persistant olfactory hallucinations.  I smell cigarette smoke.  No one here smokes, and it's unlikely that anyone is lighting up during church.  The smell can wake me up in the middle of the night, and it's a strong and clear as if someone has lit up right in front of me. 

I no longer ask if anyone else can smell it.  It's just me.  And it's annoying - I HATE the smell of cigarette smoke!  I've never been a smoker, ever.  So what the heck?  If my brain is going to hallucinate a smell, why not chocolate or peppermint for heaven's sake?

I've told my neurologist this a few times.  But I think what caught her attention this time is that the smoke smell is NEVER associated with a headache.  The twinkly lights, dark spots and synesthesia symptoms (the perception of smell as sound for example) are always followed by a headache.

So I have both an MRI and an EEG scheduled for Friday afternoon.  I've had both before.  My last MRI was during the tailspin.  My EEG was done 22 years ago because I had meningitis. 

The problem with knowing to much:  If the smoke smell is a seizure, I'll have to go back on seizure meds.  I didn't do to well with them as migraine prevention - I couldn't remember driving rules and I sometimes drooled in public. 

Pray for a negative EEG, and nothing new on the MRI.


Monday, June 3, 2013

A Hundred Bucks......

The number of times we've been in a place where we ran the risk of bouncing a check, picking between eating or not eating while traveling, skipping mom and dad's medication copayments to get Babygirl's medication instead have been considerable.  But each and every single time we were looking at that kind of money-juggling, someone came along and handed us a hundred bucks. 

We've been extremely blessed.  We avoided many, many tough choices because people simply realized the kind of pressure we must be under.  We never had to ask.  We never had to go without anything that mattered.  And we've ridden over that hump and are, this year, doubly blessed by not even needing to consider choices of that kind.  All the bills are paid, the emergency fund is recovering, vehicles are running, and there's money left over for the all-to-frequent runs for frozen yogurt.

But we know that that isn't true for everybody.  But here's a cool story:

This guy hit the bottom-of-the-barrel level of broke.  He asked for help.  He got it.  And now he's paying it back, a hundred bucks at a time.  I pray that the people who receive that money are blessed as much as we were by the many gifts we were given.  And I'm eternally grateful that I'm not one of the people who needs the gift this time.

It's just plain nice to hear stories of people helping each other, even if they've never actually met each other.