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.

DeeDee

A Pain in the Head......

Babygirl has complained of headaches off and on since about the age of seven.  We mentioned it to the family doc, and because they were few and far between, and had no other alarming associated symptoms, he recommended 'watchful waiting'.  When Babygirl started having periods at age nine, he was fairly convinced that she had common migraine, which typically has its onset one to two years before puberty.  The headaches didn't seem to increase in frequency at that time, and there continued to be no alarming symptoms, so we continued watching. 

Since the kidney failure diagnosis, the headaches have become more common.  Dialysis didn't improve them.  Transplant has not made them better.  They were a fairly regular occurrence, but not disabling, until April. Whatever undefined infection she had back in April that put her in the hospital seems to have set off a persistent run of more frequent, more severe, and more disabling headaches.  She had a horrible headache throughout that episode, and they've been occurring at least three times weekly since then. 

The transplant team has gotten her blood pressure under control, and they have not improved.  They've put her on blood pressure meds known to help prevent migraine, and they are actually somewhat worse. 

In the past three weeks she has left school early twice because of headaches, and twice has not gone to school in the morning due to headaches.  She awakens with them (but not from them).  They start up randomly in the middle of the school day.  They put plans on hold on weekends.  They can put her to bed in the early evening.  Actually, as I think about it, I'm realizing that they occur more than three times a week.  She is clearing a bottle of 100 Tylenol every two months.  The team gave her tramadol (a non-narcotic non-NSAID pain reliever) to use when Tylenol isn't helping.  She started with 20 pills four weeks ago.  She had ten left this morning.  .

I've been in a bit of denial about all of this.  After all, what's a headache or two dozen compared to the reality of kidney transplantation and dialysis?  But I know from my own experience that they can be serious, and have serious consequences of their own. 

So, I'm treating my craniorectal impaction, and paying better attention. I've started a headache diary for her.  She has a neurology appointment on November 12.  I'm guessing that they'll maybe want some pictures of her brain.  Yippee skippy.

DeeDee

As Good As.....

A friend who follows the blog and I were chatting the other day.  Babygirl's tendency to catch every bug and miss a lot of school was clearly on her mind when she asked, "So, is this as good as it gets?"

It's a good question, and one I'd probably prefer not to think about.  Babygirl has yet to make it to a swim practice because of illness.  She's in school today, but there's no practice on Friday, and she wouldn't have made it if there were - she left school early because of a headache.  Saturday practice is from 10 - 12.  Her tutor is coming at 11.  She needs the tutor - she's already missed 10 days of school, give or take.  When she's feeling well, she feels GREAT.  And when she's not, it stinks.  She'd have been back to school yesterday except that she woke up with a blinding migraine (you know it's not going to be a great day when your kid arrives at the breakfast table wearing sunglasses).

There is no way for me to guess how the next day is going to go, let alone the next week, month, year.  I do my very best to enjoy each day for whatever it brings, rejoicing when (if) we are healthy, and relaxing if (when!) we aren't.  I'm hoping that this past months' ill health is a run of crappy luck and nothing more.  Because I really, REALLY don't want this to be as good as it gets.  I want to be able to breathe well enough to exercise again (I actually made it to work out 3 times this week, but it was a struggle).  I want Hubby's back to heal so that every movement isn't some form of torture.  I want Babygirl to have no reason to expect that she's going to get sick on any given day. 

I guess what I'd really wish is to catch a time machine and go back about 3 years so I could spend this month looking forward to a winter of skiing with Babygirl and JujuBee instead of Philly runs.  I'd like to go back to being able to plan more than 24 hours ahead, instead of planning Baked Potato Bar night with friends (a great way to entertain, by the way) and ending up in the ER instead.  I'd like to go back to being the mom of the kid with perfect school attendence.

I've always seen myself as fairly flexible.  I may be slightly (ahemmm) Type A, but I'm not "Plan A," meaning that if our first plan doesn't work, I'm willing to go with the flow instead of struggling to meet an unattainable expectation (can't go camping this weekend?  How about a barbecue at home instead?).  But lately it feels as if so very MANY of our expectations are unattainable.  Babygirl's limits limit all of us, all of the time, and my life sometimes feels almost claustrophobic. 

There is no profound take-home lesson here. It simply sucks. I often say, "It is what it is."  Accepting hard times alternating with good times is natural.  Adjusting to hard times as a more permanent condition of life?  Less so.  

What if this IS as good as it gets? 

God grant me the grace to be grateful.  Because at the bottom of it all, it is good; and it's much, much better than it was.

DeeDee

A Decent Day's Work....

It seems no matter how good my intentions I am unable to put in a full week at work.  Last week, Babygirl and Hubby went to Philly, but I was scheduled to be out Monday afternoon to run folks to appointments.  That meant I intended to work four and a half days.

I called in sick Monday and Tuesday, worked Wednesday, left early Thursday (since I'd been up all night in the ER) and managed a full Friday.

This week we are not going to Philly at all.  But I have two doctor's appointment for me, one for Babygirl and one for my mom on Thursday morning, so I'm only aiming for four and a half days again.  And since today was my last day of steroids and I'm still coughing QUITE a bit, my ability to cover those days remains up in the air as well.

I've always tried to enjoy my life in the day-by-day.  But I've never really been forced to LIVE my life day by day by day by day.  I was the one who handed in my vacation schedule for the year in January.  My patients were always astonished when I was gone.  Now, they're astonished when I'm THERE. 

There is an underlying sense of insecurity in all of this.  Our family's physical health went from extremely good to extremely unpredictable overnight, without warning.  Two years ago at this time, Babygirl and I had annual ski passes, and skied regularly.  She was on swim team.  I pulled extra shifts in the ER and walk-ins.  I never missed work.  She never missed school.

I haven't worked an extra shift since November of 2010.  She's missed six and a half days of school since it started in September.  I've missed three and a half since then myself.  We never had the opportunity to use our 2011 ski passes, and decided not to buy any for 2012.  We didn't slide gently into health disasters, we plunged headfirst out of control into a bad health section of hell, and we are still grappling our way back out.

I've practiced medicine long enough to see that the average person is exactly one illness or injury away from abject poverty.  If I hadn't listened to a good insurance agent almost 25 years ago I'd be without the disability policy that is holding our budget together, and very few people I know have disability insurance of any kind except for whatever temporary coverage their employer gives them. If I get to a point where I cannot work, we are not yet financially stable enough to live on that policy alone, especially if we have to pay for health insurance for Babygirl.

I can't afford another personal health issue.  I can't crash the car, get whiplash, sustain a head injury.  I could, I suppose, have my appendix out provided I don't go for any long term complications.  I could break a leg but I'd best avoid an arm fracture - I can work from a wheelchair but not without my hands.

It's easy to see the absurdity in thinking this way.  If I had an ounce of control over any of this crap, I'd have skipped the migraine hell and gotten something easier (like the appendectomy?) in the first place.  And I sure as shootin' wouldn't have let my kid need dialysis and a kidney transplant!  Let's get her an appendectomy too!

And that lack of control is what leads to the insecurity. A few years ago I watched a nurse practitioner friend go from fully employed to fully disabled when her asthma suddenly went from minor inconvenience to biweekly hospital admissions. Life keeps coming, and you can't stop it, and the disasters can pile up deeper that we ever thought possible. 

I don't want to have to keep digging up out of things.  But I'll be darned if I can think of single way to keep them from happening.

So.  I'm back to day by day by day.  Otherwise I'll make myself absolutely insane.  So I'll settle for the fact that, despite my cough, I put in a decent day's work.

DeeDee

Compliance.....

Compliance is a term used in medicine to indicate how well a patient if following directions.  If I'm told to take a pill once a day and I do, I am compliant.  If I'm told to follow a diet and exercise program, and I don't, I'm non-compliant.

With Babygirl, compliance is largely up to us. We buy the medications, make sure the refills are called in on time, sort the pills and measure the liquids into syringes.  I have a text message sent to my phone twice daily from MyMedSchedule.com to remind ME to remind HER to take her medications.  I take schedule her appointments, TAKE her to those appointments, and make sure any necessary tests get scheduled and performed in a timely manner.

I've been doing all of this for almost a year and a half now.

All except one thing.

We are supposed to monitor Babygirl's blood pressure at home.  Daily, preferably.  While she was on dialysis, I actually DID check her blood pressure daily.  We went through a series of automated blood pressure units, and each had its inadequacies, not the least of which was that the dialysis team never actually believed their readings. They were so much lower when taken at the dialysis clinic.  Yet, still, I got the measurements.  I wrote them down daily with her weight, temperature, and the dialysis machine statistics.  And because Babygirl and I were perforce together every single evening and morning to hook up and unhook the machine, it was simply a part (however useless it appeared to be) of our daily routine. 

Since the transplant I have checked her pressure perhaps 3 times.  Seriously.  She gets it checked weekly at the clinic, more often when she's been admitted.  I actually purchased a manual monitor to overcome the perception that the electronic one doesn't read accurately.  And I used it.  Three times.  Okay, maybe four. We just aren't tied to collecting data in the way we once were.

It's become something of a joke at the transplant clinic, although I know they do not find it truly amusing.  And today they decided to make their displeasure clear.

Babygirl came home today wearing a 24 hour blood pressure monitor.  It will have to stay on until after her lunch period tomorrow and be removed by the school nurse.  She can't go to gym at first period.  At least it will be off before swim practice.

Ugh.  I know they don't mean it this way, but it feels like she is being punished for MY noncompliance. 

DeeDee

Week Seventy-three - One Blessing........

We are getting into the rhythm of the school year, making time for packing lunches, going to bed earlier, getting up on time.  Babygirl is enjoying school (so far) and has no concerns or complaints.  There are no reports of anyone sick at school, but I'm still picking up one or two strep throats a week in the office, and we're in the same neighborhood. 

Babygirl's transplant is a miracle, for sure.  But I've replaced my over-the-top worrying from last fall (she's not getting enough sleep, she feels crappy, she's in pain ALL the time!) with a chronic, simmering, low-level anxiety.  She doesn't have enough neutrophils.  She's had this before, and last time she got very sick.  She could get another mouth ulcer, and that would be a doorway directly from her germy mouth to the rest of her body.  She doesn't look the same and I don't want her to be bullied. 

Please, God - I just don't want her to suffer any more than she already has. 

To all outward appearances she is a happy, healthy, normal little girl.  And I do my very level best to make sure that my anxieties remain MINE, not hers.  If she has worries I want her to be able to tell me without worrying about whether I can take more stress.  It's not that she shouldn't know I'm concerned.  I just don't want her to know I'm obsessed. 

It's a fine line.  Hubby feels it too, and we continue to keep an eye on each other for signs that one or the other of us needs a break.  My recent migraine has him noticeably worried, so at least for a while, the focus is away from Babygirl LOL. 

I used to think there was a limit to how long any one stressor could possibly last. I know better now.  My hat is off to all of the parents out there who've been dealing with a chronically ill child!  Bless the moms who are raising autistic kids.  Bless the dads who hold a child's hand through chemo.  Bless every parent who has ever fought a school for a child who needs something extra to succeed. 

But I wouldn't change any of it, not one minute, if it meant I couldn't be Babygirl's mom.  She is, without a doubt, the blessing that keeps us going.

DeeDee

End of Summer.....

It always amazes me how my view and Babygirl's differ regarding how she's doing and how she feels.  I look back at this summer and I think, "Man, this was easier than LAST summer."   

Last summer we were learning to deal with a chronically ill child.  Last summer we hit the ER for an episode of painful dehydration. Last summer our beach vacation was interrupted daily by appalling bad news and medical updates.  Last summer we watched Babygirl begin her ongoing, agonizing stint on dialysis.  Last summer we gave up sleep for a month. 

Yup, this was a better summer.

Now swing to Babygirl's perspective.  We didn't go to the beach.  She didn't go to church camp.  We spent horseback camp week in the hospital.  Her best friend was out of town for amusement park day.  She got to enjoy all of those things last summer, so she sees THIS summer as a bit of a drag.  Besides, if you've already been out of school for two months before vacation begins, what fun is being off MORE?

Yup, last summer was better.

DeeDee

Back to the Biopsy.....

We came to Philadelphia yesterday.  We were going to stop at Dorney Park on the way here, but by my estimate ALL of New Jersey was already there, so we passed on that one, figuring there'd be fewer people on the way home today.  We ended up visiting a farmer's market, walking a couple of miles and having gelatto.

This morning's appointment was a bit chaotic. There were a lot more kids in clinic than usual, and there was a lineup at the lab.  But when the results came in, they weren't too good.  Babygirl's creatinine is up to 1.4.  There was some discussion, but the general gist of it was that we could opt for admission for hydration today with a biopsy tomorrow if (when) the numbers don't improve, or come back later in the week if (when) the numbers don't improve.

They had a lovely graph (man, I had to think about that word, since 'graft' is the more likely choice here at CHOP LOL) of all her creatinine levels since her diagnosis. It was entertaining, in a way - a VERY high plateau with a huge cliff drop at transplant.  But the less entertaining part is the slow, steady (thankfully not too steep) rise since then. 

So we are here.  She is scheduled for a biopsy tomorrow, barring some miraculous improvement in her kidney function.  And by 'miraculous' I think we'd have to drop to 0.9 or less - numbers we haven't seen since before the rejection episode at the end of May.

The biopsy is of the new kidney, and is to determine whether she is rejecting again or if the kidney hates the anti-rejection meds.  Either way, we're going to be here at least through Wednesday.

On the humorous side?  Babygirl is complaining that the IV is making her need to pee.  Um, duh?  We have to keep reminding her that if she isn't peeing as often OFF the IV as ON it, she isn't drinking enough!

DeeDee

Six Months Ago.....

We passed the six-month mark with the new kidney more than a week ago.  I mean it when I say 'we'.  Babygirl bears the scars on her body, but Hubby and I carry our own scars. 

Each time a major life trauma strikes you, it narrows your safety zone.  Each of us has said, "That will NEVER happen to me because...." and listed in our private hearts all the reasons why the afflicted are actually to blame for their afflictions.  The homeless could get work.  The mentally ill could take their meds.  MY kids ALWAYS wear their seat belts and would NEVER get into a car with an impaired driver.  MY daughters took their prenatal vitamins, breastfed their babies, and are stay-at-home moms, so nothing bad will ever, EVER happen to my grandkids.

Each of us is guilty, in the secret recesses of our minds, of the kind of Magical thinking that makes us sure that we will not suffer.  And each of us knows, even deeper, that we are lying to ourselves.  As we get older and repetitive trauma strips away our super powers, we understand more, and judge less.  And we adjust our expectations accordingly.  I AM going to have arthritis.  I'm going to take these blood pressure pills for the rest of my life.  Getting up off the floor is never going to be simple or graceful again.

Having your child diagnosed with a life-threatening illness digs much, much deeper.  There's no protection here.  All our imaginary armour fails, and there is no one to blame, no excuse that makes that child's suffering palatable to us.  I see children at CHOP who are undergoing chemotherapy, who are missing limbs from birth, who are hooked to feeding systems, IV poles, pacemakers and dialysis machines, and no one is responsible for their pain.  It just IS. Knowing that the treatments are all, in the end, delaying tactics (with more or less success depending of factors wholly outside of our control) adds uncertainty to unending uncertainty.

I have been deliberately avoiding keeping track of the milestone days surrounding the transplant.  If I did, those milestones could easily overshadow other very important things - Squeaker's birthday, Babygirl's official adoption by Hubby, sunny spring mornings, summer sunsets, mission work.  Keeping track feels a little like some kind of scorekeeping, letting me fall back into the realm of Magic (after all if the kidney makes it through this first year we are good to go, right?). But six months seems momentous.  It hardly seems possible that a little more than six months ago we were still dealing with dialysis, nightly pain, daily exhaustion. 

When I think about now, compared to then, daily life is SO much better.  Babygirl sleeps (when she isn't having all-night-up sleepovers with friends!).  Babygirl is energetic, happy, gregarious and carefree.  She's looking forward to restarting school, getting new clothes, and a new season of Glee.

My imagination is somewhat poorer for all of the experiences of the last 16 months.  I try not to let my mind run riot through the valley of the shadow, I do.  But I'm having trouble rebuilding my Magically safe world. 

No great loss. It never existed in reality. 

It's been a long road to recovery.  It's been a winding, twisted journey to Reality.  Nothing has changed but the view.  Learning to appreciate real life instead of the fantasy has benefits as well as risks.  I really don't want to live fake.  But that means I need to look, really LOOK, at life.  It's scary. It's beautiful.  It's amazing. 

Like Babygirl herself.

DeeDee

Working a Full Week......

I am scheduled to see patients every day this week.  I'm pretty proud about it - it's only happened two or three times in the past year or so.  But I'm deluding myself if I call this a "full" week.  As always, there is something or other that makes it challenging to get in those forty hours.

I started this morning by realizing as I awoke that Babygirl was supposed to get blood work this morning, before her dose of pills.  Thankfully we were told we could do it locally even though it will take a few days for the tacrolimus level to show up.  Not a problem, except that Babygirl was on a sleepover and took her meds with her!  I had to call, wake people up, and go take her to the lab and then return her, all before starting my day. 

I left work an hour early to grab my mom and take her to see her doctor.  I started calling her at 12:30 and finally woke her up at 3 PM.  I told her to take her pills and get ready to go to the doctor.  She didn't remember she had an appointment even though I told her twice last week.  On the way there she scolded me for taking her.  She could go herself, she still drives, remembers where the office is, yada yada yada.  I pointed out, as kindly as I could, that she would have slept through her appointment if I hadn't awakened her, and wouldn't have remembered to go.  She missed an appointment last week despite instructions on time and place, but I decided not to mention that one.

(As an aside, I have to say that I'm a bit annoyed by the fact that her doctor talks to me rather than her, as if she weren't even in the room.  She's not that demented yet, doc - talk to HER. I'll help out when you need me to!)

I got home, made dinner, played a game with Hubby (check out Dominion - it's a great game).

Tomorrow I'm supposed to start with a house call.  I forgot to grab the chart, so I'll have to run to the office, pick it up, and then figure out where the heck this place IS.  The first house call is always the toughest, but I really like this family so it should be okay.

Tomorrow afternoon I leave work early to have a root canal rechecked.  It's fine, but they want to get an x-ray a year after I had it done.  It's closer to two years, but hey, I've been occupied!

Next Monday is another Philly day, so no full work week there either. 

Thank God we couldn't afford to go to the beach.  I don't think I'd have enough paid time off to go!

DeeDee

Week Fifty-nine - Recovery....

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

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

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

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

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

DeeDee