Wednesday, October 31, 2012

Trick or Treat....

Two years ago, before we knew that Babygirl had no kidney function, was the last time she could have gone trick-or-treating without worrying about following a specific diet.  She was stick thin, atheletic, and ate like crazy.  I remember, though, that she wasn't feeling well that day, although I can't recall why.  We went around the block with my nephew, who was dressed in his finest chain mail, sword in hand (it's some serious chain mail - he's over six feet tall), collected a little candy and came home early.

Last year, ( ) she felt well but wasn't allowed to have much candy. 

This year, she has a headache. 

It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening.  If you are sick on Friday, you are too sick to participate in fun events for the entire weekend.  None of my kids faked sick more than a couple of days that I know of.  And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses. 

But what about tonight?  She's not sick sick, she's headache sick.  The pain will probably be gone by 1 o'clock this afternoon.  If we're lucky, the school will send her tutor out after school.  So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?

This falls into the category of trying not to raise a brat.  I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed.  And that's as it should be.  She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time. 

But what about this sort of thing?  How do I balance this stuff out?  Is this a discipline issue?  A health issue?  A life-is-short-let-her-do-whatevertheheck-she-can issue? 

I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!).  But some of these choices just stink.  Say yes to the candy bar?  Buy the newest gadget?  Allow more video games?  Let her get away with watching Glee reruns instead of reading?  (Sometimes, no, no, yes.) 

This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering.  If she were dying, well, heck, give her whatever she wants whenever she wants it.  But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants. 

I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating.  But it would have been a stupid question.  She was wearing sunglasses, gagging on her medications, and refusing to eat.  It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.

Except how to stop the headache from coming back.

Screw this.  She's trick-or-treating.  And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.


Tuesday, October 30, 2012

A Little Delay.......

Frankenstorm was kind to us.  A few trees and branches here and there, some wandering trash cans, an entirely new and foreign pile of leaves in the backyard. 

But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits.  The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear.  We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.

He reached the neurologist on call and was told that oral steroids were okay (YAY!  The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine.  While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.

Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office.  Thinking about it logically, they were almost dead center of the hurricane and not far inland.  When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers. 

Yeah, it might take a minute to get an expert consensus.  We'll start the extra steroids tomorrow.


Sunday, October 28, 2012

Preparing for the Storm....

Frankenstorm is moving slowly toward us.  Predictions have varied widely, and our community, still reeling from last years' flooding, is feeling some fear. Before I left the office Friday they made us get everything up off the floors and bottom shelves.  Stores have been crazy.  You can't find batteries, propane tanks or generators.  I imagine sump pumps are in short supply too.  Shopping carts are full of bottled water.  I've seen lines at gas stations, and a lot of general crankiness.  Considering that a third of our city was evacuated last year, and many people lost their homes and businesses, the fear is completely understandable. 

Babygirl and I spent the day raking leaves, taking down the bike shelter and getting bikes and lawn furniture into the basement.  While we were at it, we took all the stuff from the basement that is going to the church rummage sale out to the car, and drove it to the church.  This was about three hours of intense labor, and we had a good time doing it.  I paid her in Dunkin Donuts iced coffee, with a Boston Cream donut thrown in for good measure (two treats that were forbidden on the dialysis diet by the way).  Tomorrow I will fill the bathtub so we have water to flush with if the power goes out.  We are as prepared as we can be, I suppose.

But there are storms that you can never prepare for, hurricanes of the body and soul that teach you the true meaning of fear.  There is nothing short of life itself that we can lose in a storm worse than what we have already lost.  And nothing short of miraculous healing can happen better than what we have experienced this year. 

Because for every soul-searing loss, there has been a flood of kindness, prayer and support.  If ever I wondered if I was loved or cared for, there can be no remaining doubt - I am.  If ever I thought to lose faith in the goodness of the people around me, I cannot consider it.  And for all my questions about the love and faithfulness of God, I have to trust that it is His hands at work through the people around me.  If they love, and are good, and keep faith, then God will do no less.

So if you see me rant at God, ignore it.  He does.


Saturday, October 27, 2012

Headache Update....

Babygirl stayed in school all day yesterday, and had 2 hours of tutoring at home after school.  When I asked how her head was, she told me that she'd had a slight headache for most of the school day.  She took some Tylenol when she got home and it cleared completely by dinnertime.  She wanted me to go Halloween costume hunting with her today, so I asked if she could help with some of my chores so I'd have more time free.

When I woke up in the morning, her chores were all done.  Plus, she'd unloaded,  reloaded, and re-unloaded the dishwasher, cleaned the stove and kitchen counters, and dusted the living and dining rooms.  Like me, the post-migraine state is sometimes accompanied by an energy burst!

She awoke headache free, and has stayed that way all day. 

I'll take it.


Thursday, October 25, 2012

Week Seventy-nine - Please Stop.....

Babygirl awoke this morning headache-free.  We said good bye to my sister-in-law and got into Rhonda the Honda before 6 AM.  She fell asleep.  At 7:30 we stopped at McDonald's for breakfast.  She woke up complaining of nausea and light sensitivity.  I gave her the Reglan and some Tylenol with her morning meds and we drove on.  She fell asleep.

We arrived home at 9, and she woke up feeling better, so I dropped her off at school on my way to work.

She called at 12:30.  "I have a headache.  And I feel sick to my stomach."

Hubby went and picked her up.

So far this week she's attended 3 hours of school.

I came home from work and cried.


Wednesday, October 24, 2012

Two Visits in Two Days....

Babygirl's headache woke her up at 5:15 this morning.  She got up, took pain meds and went back to sleep. I woke her at 7 to take her anti-rejection meds, and she told me the headache was still a 10/10, that she felt like throwing up, and that it her her neck to bend her head down or to turn her head.  No fever, blood pressure okay, but DANG - that's a meningitis sign.

I called the on-call nephrologist and told her the story of the last two weeks.  She advised me to take Babygirl back to our local ER so they could put her in an ambulance to CHOP if she looked really ill, or to pack her up and bring her in myself if she didn't look too bad.  I opted for the latter - called in to work and hopped in the shower.

Somewhere between work yesterday and this morning I lost track of my phone.  The innumerable calls Hubby and I made searching for it killed the battery.  When I called in to work, I asked if my phone was there, and it was, on my desk, dead.  Dead dead.  I have no car charger for this phone, but I have a large number of miscellaneous cords that were at least similar so I grabbed a handful of them, hoping I could hook it to the USB charger in the car.

We got to the CHOP ER before noon, and of course by then Babygirl was ranking the headache a 1 on the 1-10 scale, but they listened carefully to the whole story, and because she was still refusing to have lights on without her sunglasses, they respected the fact that she was, indeed, still not recovered from this headache.  Using the resolution of her photophobia as their endpoint goal, they started treatment.  By four o'clock she was headache and photophobia free for the first time in three days.  She wanted pizza.  She's been chatty.  She wanted the radio on in the car.  It was very, very good to see.

But the other thing they really listened to was my concern about what to do tomorrow if the headache is back.  They consulted with pharmacy, nephrology and neurology, came up with a plan and discussed it with the family doc so he knows what to do next, if needed.

A PLAN.  Somebody else thinking ahead to the next crisis.  I can't describe what a relief it is to be sharing that load.


Tuesday, October 23, 2012

Record Breaker....

Babygirl awoke with a severe headache yesterday, and ranked it a '10' on the one-to-ten pain scale. Remembering that this child has some basis for comparison, I have to take that ranking fairly seriously.  She took her meds, went back to bed, and was still complaining of pain when I arrived home from work despite multiple doses.  She went to bed with that same headache.

This morning was another '10'.  I called the family doc and explained the situation to his nurse, asking for an appointment.  I figured maybe we could arrange the MRI that I know the neurologists are going to ask for anyway, and get a head start on things.  I mean, nothing has changed except for the extreme persistence of this headache.  She's not fond of light, but there's nothing else going on. 

The answer was a fairly resounding 'no'.  Take her to the ER, they said.  Get the pain to stop, they said.  Sigh. 

It was my once-a-month afternoon off.  I came home, and she'd had a second dose of pain meds one hour before I arrived, and ranked the headache at a 5, so off we went.  We got to the ER at 2:30, and were put into a room fairly quickly, but it was more than an hour before the nurse came in, and even longer before the doc arrived.  They gave her benedryl and phenergan IV (both antihistamines, the second commonly used for nausea, apparently the treatment du jour for headaches regardless of cause) and fluid.  They did a CT scan, the standard ER test, which I guaran-damn-tee you will say in its final report that an MRI would give more information. It was normal. They did blood work. They kept us while she slept.  Every time they woke her up she told them the headache was no better.  They let us go when I pointed out that they either needed to let us go so she could take her anti-rejection meds or they needed to give them to her. 

We got home at 8:30, she ate a little dinner (her first meal of the day), and took some pain meds and went to bed.  With the headache.  Please God that she'll awaken without one in the morning. There are records we don't want to break.



Monday, October 22, 2012

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.


Sunday, October 21, 2012

I've Got A Penguin.....

"I'm dead!  Quick, freeze me!"

"Stop jumping on my head!"

"Could you please pop my bubble?"

"I've got a penguin but I DON'T KNOW WHAT TO DO WITH IT!!!!"

When the kids were little, we didn't allow video games.  We didn't have cable.  We had a good video collection, and rented new ones as needed.  I always felt that the games were a bad idea - they discourage exercise, and limit imagination.  And commercial TV was just that - endless commercials, creating a desire for things that were neither necessary nor healthy. 

When the foster kids arrived, LittleMan considered his older sister to be his mom.  He slept with her, and it was her job to keep him quiet so biomom could do whatever biomom did.  We decided, that at five years of age, he was old enough to learn to sleep alone; and she was too young, at thirteen, to have to be his 'mom'.  The first night, he cried for his sister for 45 minutes.  Then, he began to beg for a video game.  Not his mom.  Not the grandma he'd been living with before we got them.  A VIDEO game.  It was how he calmed himself down, and how she'd kept him quiet.  It confirmed for us that we were on the right track in forbidding these things.

But time goes on, and things change, and when the Wii came out, we decided that this might be the exception to the no-video-games rule.  The games we chose were things that the family could do together - bowling tournaments, darts, tennis and the like.  Rock Band Hero was played by up to four people and taught the kids to appreciate some classic rock.  And all the games required movement, so no zombie-like screen-gazing.

A couple of years ago, I bought a more traditional game, Mario.  None of my kids had ever played it before but it looked interesting because it could be played by up to four people at one time.  I've never played, but it's hysterical to watch the kids play it, and pretty funny just to listen in. 

By the way, you need to throw your penguin at the fish.


Friday, October 19, 2012

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.


Wednesday, October 17, 2012

Week Seventy-eight - Eternal Recovery......

Considering that we are not supposed to need to see the doctors until November 12th, we are seeing a lot of doctors.

First me, Emergency Room and then family doc.  Then Hubby - took a spill, hurt his back, and we spent Sunday afternoon in the ER when the whole thing went into spasms.  Then Babygirl and the walk-in clinic.  Our co-payments for these adventures will add up to $220, not including medications, which thus far have cost over $100.

It amazes me, overall, how crappy a group of otherwise healthy people can feel. 

I'm tapering my steroids, using inhalers like they are going out of style, and wishing there was an official nap time at work.  But I'm not giving up.  I've managed to walk every morning this week and worked out twice (after not going for nearly a month) so I feel like I'm making progress!

Now we just need to get Babygirl over her SECOND cold of the year and back to school!


Monday, October 15, 2012

Walking In......

Babygirl began complaining of a sore throat on Saturday.  Sunday she stayed home from church, curled up and quiet but not really sick - no fever or body aches.

This morning she looked 'peaked' as my mom would have said - a little glassy eyed.  She wasn't hungry, didn't want breakfast, and threw up her Mepron.  We waited a bit and tried again.  And threw up again. 

Vomiting twice before school starts is a pretty sure-fired way to get to stay home.  I went to work, and she curled up again, not eating or drinking much.  By dinnertime she was still not feeling well and ate little, but pushed fluids in pretty well.  Since there's no Mepron with the evening meds, she was able to keep everything down, but I decided it might be time to have her checked out.

Now remember, Babygirl just got through the GodzillaVirus, faster and easier than I did.  And although she was sick for a week, there was nothing about it that hit me in the gut and made me worry.  But tossing meds is a very serious thing (and I confess it did not occur to me nearly soon enough that she may have lost her OTHER meds at the same time - the Mepron is so incredibly thick that seeing leftover pills might not be possible), and something about the way she looks is niggling at my mind somehow.

So we went to the Walk In clinic. Driving over she began to complain about pain in her jaw.  I gave her a piece of gum while we were waiting because of the aftertaste from her meds, and she chewed it about four times and had to throw it out because of the pain. The clinic was amazingly efficient.  We arrived after seven and were out before eight. They were respectful of my concerns, tested her for strep and sent us off for blood work, the results of which are pending. We had to walk through the ER to get to the lab, and I have to say I'm grateful I didn't take her there - we'd still be waiting by tomorrow morning I think.

Odds are good it's some kind of viral crap.  But it's tough for me to come up with a viral syndrome that makes your JAW hurt.

She's in bed.  I'm waiting to hear on labs.  I hate, hate hatehatehate that niggle. 


Sunday, October 14, 2012

Ongoing Environmental Concerns.....

I posted once before ( about the amount of trash we generated while Babygirl was on peritoneal dialysis.  And while we definitely are taking less to the curb, I can see many places where what we are doing is dangerous to the environment.

Most of the waste we generate is more ephemeral now.  Think about car emissions, tire disposal, and recycling our oil changes, for example.  We recycle her pill bottles.  We use a lot of cleaning products such as Clorox wipes that cannot be recycled, although we recycle the containers.  A lot of reusable products are not a good idea - sponges and sponge mops for one - because they can encourage the growth of germs that wouldn't hurt ME but that might break into Babygirl's weakened immune system.

But there are environmental dangers to her medications that are not readily apparent.

Several years ago I began reading about the sudden drop in the vulture population in India(  In a country where animals are considered sacred to some, there are large populations of wild cattle, dogs and other critters roaming loose.  They die where they die, and the vultures are a major part of the clean up process.  But suddenly, there are almost no vultures.  It turns out that diclofenac (an ibuprofen-like medication used to treat animal and human arthritis, sold here as Voltaren or Cataflam) was in the vultures' food stream, and it has led to their near extinction. 

What has this to do with Babygirl? 

First, think about where medications go AFTER you take them.  Lungs, kidney, either exhale, pee or poop out the leftovers, sometimes in their original form, sometimes in a metabolite.  This is true every time you drink a beer, go on penicillin or a diabetes medication, or an arthritis pill.  They get flushed, enter our water waste stream, and hopefully get purified back out. I confess, I'm not entirely sure how well that process works.  I've seen how the average septic system works.  All of EVERYTHING is filtered through the ground.

Second, Cellcept (one of Babygirl's anti-rejection medications) is specifically labeled with a warning that women of childbearing age should NOT handle the medication.  Not a problem for me, but I'm filling syringes with the stuff weekly, and making darned sure that there aren't any puddles of it on the counters for when my girls are visiting.  And this stuff is going down the toilet every time Babygirl uses the bathroom.  I don't rinse the empty bottles or syringes - they go straight into the trash, hopefully to avoid contaminating our water; but then, they end up in the landfill. 

 We won't even contemplate that Babygirl, at 13, IS of childbearing age. Here's a quote from the package insert:
"Use during pregnancy is associated with increased risks of first trimester pregnancy loss and congenital malformations. Females of reproductive potential (FRP) must be counseled regarding pregnancy prevention and planning."
Yeah.  We get to talk about THAT.  A LOT. 
Third, Cellcept is only ONE of her many medications.  Each has similar potential risks.
So.  Obviously we aren't planning on nobly letting Babygirl reject her kidney because we might get some mutant fish out there.  But DANG..... this is scary stuff.

Friday, October 12, 2012

Day of Rest....

It's three weeks today since GodzillaGerm took over my life.  Babygirl had it and got better.  The baby who gave it to me has been in for a revisit and is perfectly fine. Me?  Well, I think I may have finally reached a point where I might actually want to live.

Yesterday was layered in exhaustion.  I realized early in my workday that finishing was not going to be possible.  I couldn't stop coughing. Changing my mind made me short-winded. Food has had no taste for days and the only thing I can smell is, I suspect, the inside of my own disgusting sinuses.  I was on the third day of the new antibiotic and the sixth day of my second run of high-dose steroids.  It took eternity to finish paperwork and leave.  I hit my bed at 3, slept until 5:30, ate dinner and went back to bed. I called in sick for today before I even left the office yesterday.

This morning the steroids popped me out of bed at 3 AM, but hey, I'd already had nearly 12 hours of sleep by then!  I got up, and puttered a bit.  Ten minutes of sweeping, then a breathing treatment.  A load of laundry and a cup of hot tea.  Clean off the coffee table and read Dickens.  By 3 in the afternoon the house was reasonably tidy. I had a pot of homemade soup on the stove.  I'd had about three naps and cried over the fate of Carton:  "It is a far, far better thing that I do....."

I think this may be the first time I can remember taking a late afternoon shower so I could change into clean jammies.  From my jammies. 

During dinner I suddenly realized I could TASTE the soup.  Heaven.

Babygirl wants to go see Pitch Perfect.  I think I can stick with the jammies, don't you?  I'd hate to break a record.


PS Soup of the Day:  Ham/Cauliflower/Parsnip/Smoky Cheddar

1 onion
3 cloves garlic
3 ribs celery
1 head of cauliflower
leftover cooked parsnips (around 1 cup)
1 ham bone
fresh sage
1/2 lb grated smoky cheddar cheese
1-2 tsp Tabasco

Everything but the cheese in a pot with some water.  When the cauliflower is soft, remove ham/bone.  Strain veggies, reserving liquid.  Put all the veggies in a food processor, blend until smooth.  Remove ham from bone, cut in small pieces.  Put reserved liquid in a saucepan, bring to a boil, and whisk in the cheese until melted.  Mix with ham and veggie mixture.  Add Tabasco to taste (enough to brighten it up without making it spicy).  Top with bacon (optional but tasty!) Serve with garden salad and corn bread.

It was thick, but not high fat/high carb.  Even Babygirl liked it!

Wednesday, October 10, 2012

Week Seventy-seven - Happy Numbers......

Babygirl's results from Monday were pretty good overall.  The kidney is happy with a creatinine of 0.8 (yay!).  Her white cell count is still low, as is her neutrophil count, but neither is dangerous and both are fairly stable. 

She saw our family doc for a routine physical and he suggested some vaccine updates.  The transplant team ran this past the infectious disease team (yeah, really).   She needs an updated pediatric pneumonia vaccine followed, after a time, by an adult pneumonia vaccine (different strains of the same germ), a flu shot (done), and updated studies on her hepatitis immunity. 

Twenty-four our blood pressure monitoring revealed that her hypertension is not well controlled on the two meds she takes now, so they are switching out beta blocker (propranolol twice daily) for nadolol (once daily).  They are also hoping that this will decrease the frequency and severity of her headaches, which remain an ongoing problem at least three times a week.  The headaches are actually fairly disabling - she misses swim practice, leaves school, and so on for these.

And speaking of the headaches:  There are no local or regional pediatric neurologists who are taking new patients.  The one local doc who sometimes sees kids doesn't want her because of her general complexity, and the next nearest is almost as far away from us in the opposite direction as Philly, so we figured it just made sense to see the Philly docs for this also.

The best news of all?  We are returning to Philly (barring disaster) on November 12th, FIVE WEEKS from our last appointment!  That means four consecutive weeks without being on the road!  That is almost more than we've had free since January. 

The car is going to suspect we don't love her anymore.


Monday, October 8, 2012

Sleep is Expendable....

Saturday was lovely, and Sunday was spent doing very little but recovering from it.  It was a cold, rainy day - the kind best lived with a pot of hot tea, a good book and a comfy blanket.  I enjoyed the peace of my sister-in-law's house.  Babygirl was very quiet, enjoying a read and some music.  Both my niece and nephew were all but invisibly involved in quiet activities.  But my sis-in-law had to work. 

We enjoyed the morning together, taking a foray to a produce shop for ingredients for a wonderful squash soup, and then she left.  I expected to be asleep when she got home, but after a long peaceful day I was oddly wakeful, so....

She came home.  We had wine.  We took a few hours to catch up and de-stress, reliving the traumatic moments of her father's recent illnesses, her search for a new tenant, the relief that my nephew wasn't hurt in what was, really, a pretty bad car accident, and her pride in her new-to-her vehicle. 

We haven't, either one of us, had a lot of girlfriend time in the past year.  We have, both of us, aging parents, growing children, jobs and endless responsibilities.  Add the unexpected, the unpredictable, and the unimaginable and you've got the sum of our lives. 

Some conversations are moments outside of time.  They expand our hearts, calm our minds, and renew our spirits.  Hope and balance are temporarily restored, and security in the knowledge that we do no walk our paths alone.

So what if we didn't go to bed until the wine was gone? 


Sunday, October 7, 2012

I See Hope.....

Yesterday was a travel and goof-off kind of day.  I got up, finished up some laundry and sundry chores, loaded us up and headed toward Philly.  The plan was to pick up my niece and double back to the amusement park for their big Haunt event.

The event was fun, and I'm always amazed by how well Babygirl and her Pink-haired cousin get along.  At fifteen, she is the funniest, kindest young woman anyone could ask for.  She and Babygirl genuinely enjoy each others' company.  Conversations we had while waiting in lines had me (and the people around us) in stitches.

People say they are afraid for the future when they look at 'teenagers today.'  I look at the teens and young adults in my life and have nothing but hope for a wonderful tomorrow.  I know that my kids and nieces and nephews are not the exception, but the rule.  Adults see pink hair and ear gauges.  I hear discussions of car design and robotics, the arts and sciences.  I see young people raising beautiful, if non-traditional, families to value hard work and good manners.  I see readers, thinkers, inventors and humorists.

They don't look like I did as a teen.  They don't talk like I did as a teen.  They aren't like what I was as a teen - they are more.  More confident, more worldly, more adventurous and more attuned to the world around them.  They are tomorrows voters, politicians, and dreamers.

When I was a teen, we were blue-jeaned Jesus freaks or LSD-using hippies.  Our music reflected our lack of values, and our generation was going to send the world to hell in a handbasket.  I hear the same thing said about 'kids today' NOW that I heard people say about us THEN.  But I don't see it that way.

I see hope.


Friday, October 5, 2012

The Bittersweet Garden.....

There's a killing frost coming Monday.  I could blanket the garden, but I won't be home.  So today, using up my steroid-induced energy, I disassembled the garden.

It's 30 feet long and 3 feet wide, on the sunny side of the house's foundation.  We started it years ago when our foster kids refused to eat veggies, thinking (correctly as it turns out) that a kid will eat something they grew themselves before they'll eat it from a pot on the stove.  My memories of the garden are very intertwined with those children, so I spent most of my day thinking of them

You see, they are in a rough place.  We had them for the first time in 2001.  JuJuBee (aka Boo'sMommy), G, and GiGi were 9, 8 and 2.  LittleBro was born that year but stayed with biomom while she finished rehab.  While they were with us, Babygirl arrived, also 2.  Since Curlygirl was 8 and Citygirl was 12, it was a very busy time - thank God our 'oldest' was there - she was an invaluable support.  G and GiGi went home in 2002, and JuJuBee stayed with us forever.  In 2006, biomom crashed and went to prison and the girls came back, bringing LittleBro, then 4, along.  And that was when we started the garden.  After 18 months, biomom got out and the kids went 'home.'  Maintaining contact was challenging.  We knew things weren't going well, but there was nothing we could do about it.

One week after we discovered that Babygirl had nephronophthisis and was going to need dialysis and a transplant, social services called us and asked if we would take the kids back.  We prayed.  We cried.  We said no.  Babygirl HAD to come first.  And GiGi was exposed to a LOT of alcohol in utero.  Kids with FAS/FAE don't quite think the way other people do.  Boundaries are loose.  Impulses are obeyed.  Instructions, forgotten.  We couldn't have a child who still trims other peoples' hair while they are sleeping in a house with a dialysis machine.  We soldiered on.  Last September they called again - it would be permanent this time, they assured us.  We prayed.  We wept.  We said no. 

A month later, their biomom died, in her forties, pregnant again - complications of tough life full of bad choices.  By this time G was 18, on her own with a baby of her own.  GiGi was 13, and LittleBro turned 10 the day his mom died.  I was there when they told them - it seemed the very least I could do for my JuJuBee and the rest of them. 

Last month, they called AGAIN.  There is not one person they are related to who is capable of taking care of them. 

We discussed it.  Babygirl is stable, no dialysis, it's safer.  But we are unexpectedly out of town on a fairly regular basis.  GiGi is a teen from a family where abuse is the norm.  Hubby can't be alone with her overnight without risking his safety and reputation.  And there is the enormous cupboard of medications, posing a poisoning risk to a child whose impulse control is minimal.  And there's energy, and time.....

And on the flip side is the only hope that LittleBro will have family, Boy Scouts, camping trips.....And the joy of GiGi's quirky humor and great love.

If only they had never sent them home.  If only.....

We prayed.  We wept more.  My heart (and, I suspect, Hubby's) says YES.  But Babygirl must, must must come first.  However adaptable and loving she is, her life is overwhelming as it is.  We can't.  And we musn't.  And we said no.

So all day, as I pulled weeds, cleaned out dead plants, found the only green bean of the year on a stunted plant, washed lettuce, hung herbs to dry and put green tomatoes in sunny spots, I thought of them.  Prayed for them.  Mourned the loss of them. 

Fostering kids is the toughest job you'll ever love.  JuJuBee is one of the greatest gifts God ever gave me, and the gift of being Boo's Grandma is a never-ending joy denied to her bio-grandma.  G flits in and out of our lives, and her little boy is the image of LittleBro.  And you know something?  I think he could use a Grandma too.  I need to start counting my Grandkids differently, I think.

Of all the griefs in my life, this is one of the very biggest ones - at times even bigger than all Babygirl has lost.  After all, she still has us.  And they have no one.


Three AM.....

I was, as predicted, up at 3 AM.  The house isn't clean (yet LOL) but the bills are paid and mailed, the dog walked, pills sorted for both Babygirl and I, and laundry begun.  There are now clean dishes in the dishwasher and the sink is empty.  And I've done three days of homework for Disciple Bible so I can go away and play with a clear conscience.

I'm breathing better, but I'd like to take an ice pick to my left cheekbone to let the pressure out.  I feel like I have toothaches in teeth I don't even have! I did notice that I was winded after walking a quarter mile on level ground. 

I'll be able to get some test results later.  Although I doubt I have whooping cough, it's nice to know the test is in the works.


Thursday, October 4, 2012

Week Seventy-six - Long Weekend.....

Babygirl has no school tomorrow or Monday, so apparently I asked for those days off too.  It's always nice to be surprised by a long weekend. Babygirl and I are going to use our park passes for the last time and get the crap scared out of us in the haunted houses between the coasters.

This morning I saw my neurologist and my family doc.  Because of the uptick in my headaches, a recent medication adjustment looks to be permanent.  And because of the 'disappearing tail light' headache, she wants me to carry an anti-migraine nasal spray.  Especially in the car.  My family doc heard that story, plus the Godzilla-Cold-Asthma-Migraine story and renewed my limited hours, gave me a nebulizer and restarted steroids.  Babygirl and my mom did better.  Family doc recommended some vaccine updates for Babygirl but wants me to check with the transplant team first.  Mom's pacemaker battery is good for at least another three months. 

So I have to revisit neuro in three months instead of six, so Mom and I have appointments booked for the same day (again!) at the end of January.

If the steroids work like they did two weeks ago my house will be clean by dawn.


Tuesday, October 2, 2012

Today Is.....

I drove Babygirl to school this morning, and we were discussing swimming.

Me:  "Did you know your uncle was a swimmer?  He set some high school records.  He was also lifeguard at the pool in the summer - you know, the handsome guy all the girls drooled over."

Babygirl: "Wow. A whole lotta years have gone by......"

 It was a VERY good thing that I had just used the bathroom.

Today is AWESOME.  I know this because of Babygirl.  I dropped her off at school this morning with a big smile on her face.  Today, she will actually be able to finally swim with the swim team (she's been on the team but not allowed to swim pending clearance from the school doc, and then Godzilla got her).

She was wearing knee-high black boots, bright neon pink skinny jeans, and a black t-shirt.  And that is how I know about today - the fluorescent pink smiley face on the black shirt surrounded by the words:  "Today Is AWESOME". I don't remember buying the shirt or actually seeing it on her before, but it made me smile, really smile.

I agree.


Monday, October 1, 2012

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.