Subtle Changes.....

I commented yesterday about Babygirl cleaning the kitchen. The amount of work she accomplished in a short time made me think...

Last year at this time she would not have been capable of doing such a task. She was too tired, too sleep-deprived, too anemic, and too immature.  It was easy to see a big energy jump immediately after the transplant - an almost overnight change to a more energetic, happier, rested child. 

But aside from the distinct hyperactivity caused at times by the high dose steroids, she settled over the late spring and summer into a sort of lassitude.  She watched a lot of TV, and avoided strenuous activity.  When I'd go for a walk, she'd stay home, quiet.  While she was certainly dramatically better than she was pre-transplant, she still wasn't quite herself.

There has been a gradual, but radical change over the last few weeks.  Her energy levels have risen, her wit has sharpened, her laughter and sense of purpose have become more intense.  It snuck up on us, this return to the Babygirl we remember from a few years ago.  She wants to walk the dog.  She wants to get out of the house.  She wants to get back on the swim team.

It occurred  to me that perhaps blaming her hyperactivity on the steroids was an error.  If I think back, those periods of energy all correlate with creatinine levels of 0.9 or less.  The fact that she hit those levels because she was on steroids the first couple of times may have been coincidental. 

We are liking Rapamune.  It's been nearly a month of nearly normal renal function, and she is a new kid.  The possibility that the tacrolimus may have been causing some depression has crossed my mind, but logic suggests that the simplest answer is that she simply feels better when the kidney is working at its best.

DeeDee

Reading the Labels.....

I can't say I accomplished much yesterday in terms of housework. But I did coax my mom out of her house and her funk by taking her for a much-needed pedicure.  She enjoyed the massage chair, which surprised me given that she doesn't really care for backrubs much.  We stopped for coffee, I sorted her pills and balanced her checkbook. 

I did better today.  After church, Babygirl and I went to work. She volunteered to clean the kitchen.  I didn't give her any special instructions about it, but as I went back and forth doing other jobs, I saw her working.  And working.  And working.  She emptied out cupboards, wiped them down and rearranged things neatly.  She disassembled the stove top and cleaned all the parts.  She loaded and unloaded and REloaded the dishwasher, swept the floor and mopped it.  Oh, yeah, and she cleaned the refrigerator.

I'd have been satisfied with clean counter tops and floors.  I was stunned by the degree of initiative she took.

I did the living room, dining room and bathroom with a bit of miscellaneous tidying elsewhere.  I also caught up on the laundry 

Babygirl has quite a few new clothes. And I make it a habit to check and follow the instructions on the labels of all new clothes to make sure I don't accidentally destroy something.  She loves skinny jeans, and even managed to find a pair that are reversible - hounds tooth check on one side, denim on the other. 

Now for those of you (us!) who do not wear skinny jeans, I have to tell you that it is impossible to take a pair off without turning them completely inside out in the process, so they come down the laundry chute inside out.  Since all their labels say that they should be washed inside out (why, I have no idea), that works out okay. 

But would someone please explain to me how you wash a pair of reversible pants "inside out"?

DeeDee

Insomnia.....

Sleep has always come easily for me. For most of my life, I've not been a worrier.  I'm more of a "planner" and "doer", the one who tackles the hard stuff first and leaves the simple stuff for later if needed. 

Medical residency made me sleep, well, if not better, at least more efficiently.  The chronic sleep deprivation meant that I slept VERY well and very quickly whenever the opportunity arose.  I never lose sleep worrying about work.  If I'm stressed by something at work, I'm more likely to come home and cry it out than to ruminate about it.  Even the menopause process rarely left me sleepless (although the tossing and turning associated with the hot flashes apparently woke Hubby on a regular basis, poor guy!).

There is no possible way for me to "plan" and "do" in this situation.  There is no simple stuff.  Basic housekeeping is stressful and complicated.  Maintaining reasonable hours at work, impossible.   Being a loving wife and mother, challenging.  Being a loving and dutiful daughter, daunting. 

While I was on the phone yesterday (for over an HOUR) seeking (and failing to find) a local pharmacy that stocked Babygirl's new medicine, I was also filling out school physical forms, writing lab orders and prescriptions, and taking three different calls from my mom, all of which involved her crying hysterically and hanging up on me.  During this time, the nurses were prepping patients in rooms for my afternoon appointments, most of which I ultimately had to cancel.  I saw the folks who were already there, triaged the rest of the scheduled appointments for either cancellation or immediate follow up with a colleague (whose schedule was already overbrimming), and as I was leaving took a fourth call from mom in which I had to explain why, if she needed food, she should manage her OWN shopping.  This resulted in more crying and another hang up.  And then the traffic-laden 150 mile run to pick up the medicine and beat the pharmacy closing time of 6 PM (it was closer than I care to think - 75 miles in 1 hour, 45 minutes, and I got on the highway at 4).

All this would probably be easier to manage if I were actually sleeping.  Right now I'm managing to get about 3 good night's sleep in a week, and the rest can vary from falling asleep at 3 AM (to get up no later than 6 for work) to multiple awakenings, each lasting 10 minutes to an hour.

Frankly, I'm tired.  I'm cranky.  I want to sink my toes in some sand and let the sound of the ocean fill my mind. 

But today is pill-sorting day, both for Babygirl and my mom.  Today is clean-the-house day.  BoosMommy needs to be picked up and brought over so she can do her laundry.  I have to pay bills and catch the checkbook up.  And it's definitely NOT relax-and-catch-a-nap day. 

Anyone with suggestions for better sleep?  Now's the time to speak up!  I've tried melatonin and benedryl already. 

DeeDee

WHY the Heck.....

Why the heck is it that CHOP manages to call when they aren't changing anything but seems to miss us when they ARE???

We had preliminary results when we left on Monday, as usual.  Because of her neutropenia, the team was going to discuss possible medication changes on Tuesday.  By the end of Wednesday I had heard nothing, so on Thursday I called.  The "Lab Report Line" lets you leave a message and promised to call back within two working days, so I might not hear until Monday, right?

Today they called, and they want to decrease Babygirl's mycophenylate.  The only way to do this is to start a liquid, which they want to do immediately.  Ummm, really? 

So they fax it to our pharmacy, which does not stock it.  They can get it by Tuesday.  I spent an hour calling every type of pharmacy locally - Walgreens, CVS, Rite Aide, Medicine Shoppe, the local grocery pharmacies and the local hospital pharmacies and the local private pharmacies, and more than one of each type when applicable.  Everybody can get it by Tuesday.

So, I cancelled my afternoon.  I'm finishing paperwork, putting gas in Rhonda the Honda and hieing off to a pharmacy 75 miles away, at the University.  They close at six.  Wish me luck, and a ticket-free ride.

Thank GOD I take good blood pressure meds.

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

Yesterday's Results......

Yesterday's visit with the doctor was same old/same old.  Blood work. Breakfast.  Weight (stable) height (unchanging) vital signs (acceptable).  Dr. A came in and went over what we have available at the time of the visit:

Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be.  Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected.  We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed.  Babygirl is, therefore, more or less done growing.  That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky.  Kidney disease stinks.

Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made.  I know it was done, but I'm sure I never even thought about asking for those results.  The kidney failure was the only thing we focused on.

Creatinine is 0.8 for the third time in a row.  The kidney likes Rapamune.  And so do we.  A couple of mouth ulcers?  No biggie.

Neutrophil count is down to about 750.  Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again.  Okay for school.  Watch for fever.  Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.

See you in two weeks.  Or sooner, depending.

She feels great, so it's a good day?

DeeDee

Migraine.....

The night before last I had yet another bout of insomnia and slept about 4 hours, went to church and then drove to Philly.  I remember being awake for a couple of short stretches during the night last night also.  So I loaded up heavily on coffee for the drive home and handily set myself up for this:

We left the hospital a bit late, near eleven, and aimed to stop for lunch around one.  We were about 45 minutes into the drive when I noticed that the car in front of me was missing its left tail light.  Missing - not just a blown bulb, but the entire red glass.  As I continued to evaluate the situation, the left half of the trunk hood vanished, along with the rear wheel, leaving the car apparently running smoothly on three tires with the driver's rear neatly floating above the pavement.

Migraine auras are fascinating.  Even when you know that the outcome is not going to be pretty, realizing that your brain is simply rearranging visible reality is like watching an evolving episode in a good sci-fi show.  The blue police box never shows up in MY neighborhood, but hey, you never know.

Keep in mind that I am driving at 70 mph on a limited access highway.  To add to the insanity, I am in a construction zone with infrequent emergency pull-offs, and I can't read signs anymore anyway.  I have Babygirl pull out 3 Advil, swallow them dry and hope for the best.  Twenty minutes later, right on schedule, my left eyeball started to feel like it was going to explode and ooze down my aching cheekbone.  I asked Babygirl to unwrap a summatriptan tablet (since migraine meds are ALL packaged in such a way that NO ONE with an actual migraine-in-progress could ever open one) and swallowed that as well.

Twenty minutes later still the summatriptan side effects kicked in - tight jaw, painful swallowing, tight chest - all without the intended benefit of taking away the damned migraine. Add to this the almost overwhelming desire to simply close my eyes and drift off to sleep....

Why in HELL, you might politely ask, did I not pull over and call 911, or at the very least exit at the first possible moment and hie myself to a hospital?

I've never had a hangover, and never had so much to drink that I was still drunk while I had one, but I imagine that that MIGHT be as close as anyone could come to the interior experience of a really whopping migraine.  In my opinion migraines don't hurt so bad, really - it's no worse than a bit of repetitive hammering to the temple. With an actual ballpeen hammer.  It's the mental confusion that takes over, frequently long before the migraine pain becomes the primary problem.  The lack of blood flow that starts the process makes me incredibly stupid, and I seem never to remember that fact until I look back with some degree of objective horror at what I was doing at the time.

Five miles before our intended lunch location I did pull over.  PA turnpike toll booths all have public restrooms (did you know that?  It's an awesome feature.).  I was having enough nausea (very unusual for my migraine type) that I decided to pull over and check out the bathroom.  I came out, and Babygirl went in.  By the time she came back to the car, I was asleep.  Smart child - she let me.  I woke up about 15 minutes later, and drove the remaining five miles to 'our' restaurant.

I ate a little, and when we went out to the car, I slept a little more before getting back on the highway.  I foolishly lost an internal debate about whether to report to a local hospital or keep going.  Entirely by the grace of God, we made it home a little over an hour later without incurring any disaster.  I immediately went to bed, slept two hours, and now I'm fine.

Fine, not counting the sickening sensation of awakening to the absolutely appalling risk I took of driving so impaired.  Retrospectively the risk is obvious, but while it's happening it all seems perfectly sensible to soldier on and head for home.  Maybe that's why so many people actually drive while drunk - maybe it just doesn't seem like such a bad idea at the time.  And for the life of me I can't figure out a way to keep it from happening. 

Thank God that migraines of this magnitude are rare for me.  It's almost hard to remember that I lived with this level of altered consciousness for nearly a full month two years ago.

DeeDee