Water.....

Water is something that we all tend to take for granted.  We live in part of the world where water is safe, clean, and plentiful.  If someone catches a water-borne disease from our municipal supply or from bottled water, it is almost outrageously shocking.  We step into the shower and water of whatever temperature we desire cascades down on our aching muscles.  We run washing machines and dishwashers.  We flush.  And most of us think nothing at all of it.  It's normal.  It's our right, right?

Ancient peoples had more respect for water.  It represented birth, life, health and survival.  All early creation stories center around the presence of water.  God is compared to water:  "And the earth shall be filled with the power of the glory of the Lord as the waters cover the seas...."

We are created of dust and water and the breath of life.  The balance of water in our bodies is a life-and-death issue.  Too much water and we can have seizures, heart failure and death.  Too little, and, oddly, we have similar problems for different but equally dire reasons.  Homeostasis (the ability of the body to maintain itself in steady state) is critically dependent on the flow of water in and out of the body.  Too much of either, too little of either....things go badly.

I was homeless for a brief time when I was in high school (or "alternatively housed" as the author of The Boxcar Kids Blog would say), living with my family in a campground.  I had to walk a bit, outdoors, to the nearest facility with running water.  I had to help carry any water needed for cleaning and drinking back to our campsite.  If I needed a bathroom, it didn't matter if it was raining, sunny, or (on more than a few occasions) snowing.  Since that time, I honestly never sit on a toilet or step into a shower without thanking God that it is indoors.

Babygirl's kidney is (like everyones) the indoor plumbing system that we all take for granted.   Fluid in, fluid out.  Dialysis was the medical equivalent of using an outhouse, inconvenient and not as effective as the real thing.  None of us spend a lot of time thinking about plumbing, and probably a lot less time pondering the miracle that is homeostasis.  Now our family thinks about it all the time. 

Water is life.  So DRINK, Babygirl!

DeeDee

Unhappy Kidney.....

Hubby and Babygirl fought an ice storm to drive to the University for blood work yesterday.  When I hadn't heard anything today by three, I called.  I got lucky and actually got through, which is absolutely amazing.  They hadn't gotten anything yet, so they checked and called me back.

Babygirl's creatinine is 1.4, the highest it has ever been (we hit this level once before and they admitted her).  Her tacrolimus level is very high, so we are to start a 25% reduction in dose tonight.  I told them about the recent episodes of dehydration due to all the nausea, and they actually felt a bit better.

Push fluids.  Push fluids, push fluids.  And drive to the University next week to get more tests.

At least they didn't call us down to Philly.

DeeDee

Fright....

Friday Babygirl stayed home from school.  When I got home from work, JuJuBee was there with Boo, and Babygirl was nowhere to be seen.  This is unusual - Babygirl loves being an auntie and will usually push herself to spend time with Boo and Squeaker. 

"Where's Babygirl?"  "She said she didn't feel well and went to bed."  At five-thirty in the afternoon???

I went upstairs to her room and she was huddled under the blankets with a container nearby in case of vomitting.  She had awakened with a headache in the morning, but the nausea just kept getting worse.  I went for the thermometer and got close enough to get a good look at her and caught a whiff of ketones. 

Ketone is the stuff that nail polish remover is made from.  Remove the perfume, and what's left is what it smells like when someone is dehydrated and underfed.  Ketones are a by-product of burning fat, an indication that there is no glucose available in the system for use. 

For Babygirl this means that she is WAY down on fluids.  This is the first time I've smelled this on her despite the fact that nausea is an ever-increasing issue for her lately.

"What have you eaten today?"  "Nothing.  I feel like I'm going to throw up."  "Have you had a fever?"  "No, I checked." (Smart girl.)  "Did you take your nausea pills?"

Nope.  She didn't think of taking them, so I went to find some.  She has a bottle of generic Zofran, which is frequently used to prevent nausea due to chemotherapy.  I couldn't find it.  She had no idea where it might be, and thought maybe she'd run out (sixty pills for nausea in less than 6 weeks??? Holy crap.). 

Disasters seem more common on weekends, don't they?  Our pharmacy closes at 6 and is not open on weekends.  I barely got the call for the refill in in time for me to pick it up.  I usually walk to the pharmacy, but I drove this time!

The good news is is that the medication worked swiftly and well, and Babygirl was able to start catching up on fluids by seven. 

And by about ten my pulse returned to normal.  I really have to explain to my adrenal glands that they don't absolutely HAVE to give it their all each and every time Babygirl does something new.

DeeDee

Transportation.....

Rhonda the Honda and the Green Goose are 18 and 13 years old, respectively.  They have had, as you all well know, their ups and downs.

The Goose failed inspection this month, and needed new brakes.  Ever since this repair, she's been acting, well, odd.  Nothing to do with the brakes exactly, just poor pick up times - almost as if she needs some Geritol or something. 

Rhonda simply acts old.  She's got plenty of get-up-and-go, but little things just keep slowing down.  Like the automatic windows - I have to pull a bit to get my side all the way down, and give a push to get it up.

But as every long-suffering car owner knows, there comes that final straw.  The one thing, which while insignificant in and of itself, that makes you say, "It's time."

For my old Toyota, it was the loss of function of the driver's side windshield wiper at 200,000 miles.  In the rain.  With the baby in the car.

For Rhonda, it was the automatic door lock system. 

I arrived home the other night and shut the car off, gathered my things and tried to exit the car.  I pushed the power 'unlock' button.  The lock knob popped up, and immediately popped back down.  I tried again.  I tried the unlock button on the passenger side.  I tried quickly pulling the door open in the millisecond that the knob was up.  I tried manually pulling the knob up.  I could have powered the car back up, and rolled down the window to use my key in the lock on the OUTSIDE of the door, but, hey - remember that window problem?  Yeah.

So I called Hubby (thank God for cell phones!) and he came out with his key to let me out of my own personal version of Christine.

So we had a discussion.  A budget assessment.  Took a deep breath and went shopping, and not for the first time.  But this time we took a different approach.  We went to a repo sale.  We had no specific plan, just something relatively low mileage to replace Rhonda, preferably around 4 years old.  We planned on looking for something to replace the Goose while we were at it, just to get a feel for the market at this type of sale.  We set a maximum amount, figuring we'd be able to do pretty well with it.

On our way to the sale, one of the wheels on the Goose locked up, squealing and smoking for a bit before releasing.  Hubby had his own 'final straw' moment.

So we ended up buying two vehicles and trading in both of our clunkers at once.  Both are slightly older than we had in mind, but both are in great shape with low miles.  Mine is an '05 Honda Accord, and Hubby's is an '06 Toyota Tundra.  Both seat five, so if we are taking a crowd to the beach we'll need to take both cars.  The rear seat in the truck is so roomy I have no trouble sitting there, and Hubby can get in and out of the Accord despite his knee.

The entire process took seven hours.  We tested a BUNCH of cars.

And Babygirl go her fondest wish.  The Accord has heated seats AND a sunroof.

Hubby is a very, very happy man.

Both cars together minus our trade-ins came to just slightly over what we set as the maximum for one.

It's all good.

DeeDee

Week Ninety-one - Forgiveness.....

I've forgiven myself for many things in my life.  We all have - how could we go on living if every day was consumed with guilt for things that are long past and no longer under our control?  It would, I imagine, resemble hell. 

But the parents of chonically ill children live in a special type of hell.  It's the hell of second-guessing, the hell of I-should-have-seen-it-coming, the I-wish-I-knew-then-what-I-know-now hell.

I've forgiven myself for not noticing that Babygirl couldn't see when she was little.  She was surrounded by developmental experts and NOBODY noticed.

I've forgiven myself for not realizing that her kidneys had failed.  The symptoms were subtle, and nothing I could have done would have changed the course of the disease in any way.  Nephronophthesis always ends in kidney failure.

But the headaches.  Oh, Lord, the headaches.

Babygirl never suffered as a consequence of her vision, except that it put her a bit behind at school.  The suffering she's had due to her kidney disease was sadly inevitable.  But the severe daily headaches are looking to have been triggered by the anti-rejection medication, Rapamune.  Starting the Rapamune was a good idea.  Continuing it so long after I had begun to suspect it was the headache trigger was NOT a good idea, and  I began suspecting that the Rapamune was the trigger as early as last October.  I mentioned it to the transplant team and brought it up with neurology.  And despite my suspicions, I allowed them to put my child under general anaesthesia and stick needles in her spine rather than insist that they make a switch FIRST to see if this was what the problem was, which will all turn out to have been unnecessary if Rapamune has been the culprit all along.

It's easy to say the tests were needed to rule out a subtle infection.  In fact, it is inarguably true that that is the case given her somewhat meningeal symptoms.  But....those symptoms were part of the migraines, it turns out.  And the migraines, triggered by the medication.... A hopelessly circular line of logic that leads back to my passive acceptance that the specialists are smarter than I am and know more about it all than I do.  I was afraid of the wrong things.

The crazy part of this is that, given Babygirl's overall state of crappy health, if they'd switched meds first and she went back to two headaches a week instead of seven, those concerns would still exist.  And  I know that. 

But I flash back to the nights of our last hospital stay, and her suffering and pain.  Her preventable, unneeded suffering and pain. 

It's tough to make choices for your child that cause suffering in the name of making that child better.  Dialysis was one such choice.  It was do or die, quite literally, and as terrible as we felt about it, there was nothing on this earth that we could have done about it.  Installing a new kidney was hardly painless, and her repetitive hospitalizations for infection and rejection haven't been a ball of fun either, but they ALL had a life-or-death feel to them that was TRUE.

This last one....damn.  Damn.  Damn..... It's tough to forgive.

DeeDee

Attendance.....

Monday - school holiday.

Tuesday - Babygirl made it through the whole day!

Wednesday - headache, no school.

Thursday.....

I got up this morning - no Babygirl.  So far that's come to mean that her alarm went off, her head is killing her, and she's gone back to sleep.  On days like this, I wake her up to take her pills and let her go back to bed.  This morning I was a bit slow about it and woke her up about 7:30, and then ran to fit in a shower so I could make it to work by 8 (live-work-shop-worship in the same zip code - it saves time LOL). 

At 7:50 I was putting on my coat and babygirl was saying, "HEY!  Wait up!" 

So I took her to school.  Heaven alone only knows if she had breakfast or not.  So this means she's attended more school in January (four days so far) than in November and December combined (zero is a pretty low number).

Still holding my breath.....

DeeDee

Hold Your Breath.....

Babygirl finished an entire day of school today.

When I got up this morning she had already had a shower.  I had to turn down some of the lights because they were ALL on full tilt.  Usually Babygirl gets up after me, shuts them all off and crawls back into bed.  This morning my chatterbox was back.

Crossing fingers, toes, and eyeballs.

DeeDee

Monday....

I'm not a person who hates Monday.  I like my job, I like my co-workers, I like my patients.  It's a blessing to be able to say all of that, and I'm intensely grateful for that blessing.  I'll watch the inauguration this evening, but the little snippets I've seen make me wish I could attend such an event in person.  Where else in the world is such power handed over on such a regular basis without the threat of civil war?  I'm grateful for my country.

Babygirl has the day off, so I can be grateful that she isn't missing school today.  Her weekend wasn't terrible, her headaches a bit milder and a bit later in the day than we've been seeing.  Time will tell how well the medication change is working.  I'm grateful (although it might not always seem so!) for her doctors and her medical care.

I have no evening commitments, so it's dinner with family tonight.  I'm grateful for enough food, a warm house, laughter and love. 

Despite all we've dealt with, and the road Babygirl walks, we do give thanks for all that is good in our lives.  Like many people I know, we've started writing down the good things that happen on pieces of paper and keeping them in a jar for review at the end of the year.  It will be an interesting little pile of paper, I'm sure! 

DeeDee

Quietude.....

It's nice, now and then, to have nothing to say.  We've passed a peaceful weekend.  The house is clean.  We had friends over for dinner on Saturday and played some games.  Our friends are all going to spend time on The Bench with us, so we'll be together for a long time!

Today has been quiet.  It was lovely to welcome our pastor back from her maternity leave.  The fact that a bat was cruising about the sanctuary all through her sermon escaped her notice, although she DID wonder why people suddenly got up and left before the offering!  I simply assumed she had the best poker face EVER and was ignoring the thing LOL.

I spent some time with my mom, time with my Babygirl, and time with my Hubby.  I caught up on sleep and chatted with my dad on the phone.  There's a cat on my lap and I'm all caught up on Words With Friends.

I vaguely remember that life ran at this pace about seventeen years ago, when it was just Citygirl and I.  I'd forgotten what it feels like.

DeeDee

Mixing It Up.......

I got the final word on this weeks' plan for Babygirl, the kidney and the headaches.  The transplant team chatted with Neurology and this is what they are doing:

We are stopping the Rapamune.  We are restarting the tacrolimus at six pills twice a day, a decrease from eight twice a day last August.  They are stopping the liquid Cellcept and increasing the dose to 250 mg so she can go back on the pills.  We are to take her to the University for blood work next week since a local draw won't yield any results for several days and they need to know that the kidney and white blood cells are handling the changes. 

Babygirl opened her pills sorter last night, grimaced at the larger number of pills but rejoiced about the lack of icky liquid in syringes.  On the whole, she'll take it, although given the fact that we JUST yesterday got a new  ($2000) bottle of the liquid, we may use it up later when we're sure what dose she's staying on.

I had stored the tacrolimus and cellcept away, so we have plenty of both since neither expired.  I feel better that they are not going to waste. 

Pray.  Pray that the headaches were due to the Rapamune. 

DeeDee

Meds VS Headaches.....

All of Babygirl's labs from yesterday were okay.  Her liver is improving.  Creatinine is a somewhat disappointing 1.0, but she was likely dehydrated since the headaches impact her ability to eat well and push fluids.

Nephrology was first.  We discussed several issues:
     Is the Rapamune causing the headaches? 
     Can we stop it temporarily to see? 
     Can we decrease the prednisone to every other day?
     Would that decrease its side effects?
     How can we help Babygirl get her life back?

Nephrology agreed that if Neurology wants to try stopping the Rapamune that it can be done.  They also agree that decreasing the prednisone to every other day would decrease the impact on Babygirl's weight and body shape.  But they feel that changing more than one thing at a time is probably not a good idea, and they asked me to report back on what Neuro has to say.

Neurology pointed out that just because there is a temporal relationship between the start of the Rapamune and the increase in headaches doesn't mean there is a causal relationship.  However, if we stop the Rapamune and the headaches go away, it certainly points in that direction.  He feels that we haven't given the amitriptyline enough time and it deserves another month before being considered a complete failure. He seemed surprised to learn that Babygirl is taking so much medication for pain, and that she's missed SO much school, but advises more patience.  He suggested three different seizure medications (advising that Nephrology should select one and giving his personal preferences), and suggested that I ask Nephrology about Feverfew, an herbal remedy.  He had nothing to say about communication issues during her hospital stay.  And he had no advice about coping.

I took his list back to the transplant team.  They met today to discuss the options.  Because of safety issues  they picked the seizure med that  Neuro likes the least (of course!).  They are divided about changing anti-rejection meds, but agree that a short-term change is unlikely to pose a problem.  They have the pharmacy team researching Feverfew. 

I voted to switch back to the tacrolimus.  I still have about a million of them, and I'd rather go back to a known set of side effects temporarily than add a new medication from neuro.  The team is going to discuss it again and call me tomorrow.

I frankly hope that this is a medication side effect.  At this point I think I'd rather have her on a totally experimental medication than to watch her suffer more.

DeeDee 
    

Week Ninety - Anger....

Tomorrow is our second visit with neurology, not counting the covering physician during Babygirl's admission last month.  The amitriptyline dose is up to 50 mg and is not working.  Six weeks of total dietary compliance did  not change anything.  No additional plans have been made or suggested, although I'm assuming that tomorrow's discussion will cover that.

My issue is that I am STILL flaming mad about the fact that her doctor did not follow up on the studies he ordered while we were in the hospital.  The miscommunication still burns.  If Babygirl were getting any better I'd probably be less hostile, and less anxious. 

I've not been sleeping well again, and I'm sure my current level of exhaustion is not helping at all.  Today's Bible verse in Sunday school was from Isaiah :  "When thou passest through the water I'll be with thee; through the waters, they shall not overflow thee.  When thou walkest through the fire, thou shalt not be burned; neither shall the flames kindle upon thee."  (Sorry for the King James take - I don't have a Bible  with me and that's how I learned it as a kid.)

It made me cry.  If ever there was a time in my life I have felt as if I were in the midst of flames and floods, this would be it.  And I am drowning.  Or burning.  Or both.  And I feel like I could easily come off as the psychowitch mother from Hell if I am not careful.

I need to make Babygirl's needs clear:  She NEEDS to get back to school, and SOON.  She needs a break from the pain, and she needs hope.

I need to make my needs clear:  Talk to me.  Give me a lifeline, and some guidelines about when to use it.  Right now I feel like they don't want to hear from me except at appointments.  The transplant team has never made me feel like that. 

And I need to get across to the transplant team:  I think the Rapamune has something to do with the headaches.  I understand we don't have a lot of alternative, and that keeping the kidney alive is a huge priority; but if they can't find a way to actually make her life better we are failing all the same.

Above all I want to not end up screaming or crying.  And if I MUST cry, I need to do it with the transplant folks - they (I hope) do not see me as a psychopath.

Sigh.

DeeDee

The Bag.....

Babygirl and I are leaving for Philly tomorrow.  We'll see the transplant team, and neurology.  Despite her promising start to the new year, she hasn't had a headache-free day since right after Christmas.  She made it to school two days the week before last, and not at all this past week. I tried to talk her into going shopping this morning and she just couldn't do it.

The game of the week is Yahtzee.  For the headache-prone among us, we have lined the bottom of the cup with a tissue to decrease the noise.  While Babygirl's tutor is convinced that she's 'caught up' on math, I'm watching her count totals on her fingers.  But that's another story altogether.

Traveling means that I have one less day off.  I spend much of Saturday cleaning, grocery shopping, paying bills and so on, so Sunday is usually a down time day.  Today was also loaded up with helping Curlygirl care for Squeaker.  He has a nasty stomach bug, and it's his first illness, so she needed a bit of extra support (and a Grandma to run for Tylenol and Pedialyte!). 

But at least I don't have to think about packing.  My red overnight bag seems to take care of itself, somehow.  Right now, unpacked, it has deodorant, hair conditioner, a tube of my favorite hand cream and an unused toothbrush.  There are spare iPod and phone chargers.  Who says I can't learn from experience? 

My comfy jeans are clean.  Jammie pants just seem to show up in there along with spare socks and undies.  My frequent-buyer coffee card never leaves my wallet.  Babygirl's med list, and mine, live in the back pocket of my purse.  There's a deck of cards with the med lists, and somehow a spare game of Phase 10 appears when needed.

I remember panic-packing on more than a few occasions.  I've certainly survived a couple of admissions without much extra.  But I've pared it all down to The Bag.  We manage.  We stretch our imaginations and our patience and our resources and our energy, and it all fits in one small bag.

DeeDee

Week Eight-nine - Murder......

Our neighborhood has been invaded by a murder of crows.  There are at least fifty of them swirling around a large evergreen in our neighbor's yard, cawing and squawking and announcing LOUDLY that the end of the world as they know it is apparently at hand.  A cloud of darkness seems to hover around them.  They are not peaceful neighbors at all.  I first noticed them on Christmas Eve, and they are still there, raucously announcing to all and sundry that I and my dangerous dog were out walking before sunrise this morning.

I grew up in the country.  A sudden caw from a crow will get your attention when you are out in the woods and make you look around for hidden predators.  Warnings like this are supposed to have meaning and purpose, alerting you to avoidable dangers.

These city crows feel like a metaphor for our life right now, though.  Their meaningless, repetitive, conflicting warnings echo through our windows, making us alert for unseen, unpredictable, and likely imaginary dangers.  A dog on a leash is NOT a coyote.  And living life as if every Golden Retriever is life-threatening is just plain silly.

The problem is that I can't tell the coyotes from the retrievers.  When Babygirl is having a tough day, deciding which symptoms are killers and which are benign is, to say the least, stressful.  And the other day, when she was crying and not feeling well and I made her leave the house, I cried from the time she left until I went to rescue her.  Even though I turned out to be right, and all she had was PMS and nerves, the "I don't feel well" was a raucous warning that kept ringing in my head, black wings beating and beating and beating.

I don't know why a group of crows is referred to as a Murder and not a flock.  Perhaps someone besides me noticed the disquieting feelings that develop when such a group is sounding a false alarm every few minutes - somewhat similar to the tension that develops when a smoke detector is randomly beeping for a new battery.  It's murder living that way. You know that something is wrong, or is going to be wrong, or is going to go wrong. 
And you begin to forget what 'right' feels like.

DeeDee

Award Application.....

Dear BMY Committee:

I would hereby like to submit for your consideration my application for Bad Mother of the Year.  I realize that it IS early in the 2013 competition, but I believe my past performance would indicate that I could be a contender in this contest.  While I realize that my first run at winning this years' prize is not as spectacular as my winning 2011 entry (failure, as both a physician and a mother, to realize my child was in need of a kidney transplant until she was in DIRE need of said transplant), I hope that this early example of my lack of parenting skills gains your notice:

Babygirl has, as you know, been quite ill, most recently suffering from frequent headaches.  I like to think that I have developed a good "gut" feel for when she is really not doing well, and that I can spot exaggeration and malingering with the best of them.  So when Babygirl was busy telling me on Sunday that she didn't WANT to go to ski club with a bunch of strangers to go skiing, I put it down to shyness.  And when she began crying and insisting that she didn't "feel good" (although without substantial headache), I blamed situational anxiety.  When she called me one hour after arriving at the ski resort and begged me to come and get her, I relented against my better judgement.

When I arrived she informed me that she had gotten her period (and was unprepared). When we got home and I got to deal with the aftermath, I decided that I might as well contact your committee and submit my application forthwith.  Any woman who has raised 7 girls who cannot recognise a simple case of PMS is clearly a contender in your annual contest.

I will submit supporting narrative as the year progresses.

Sincerely,

DeeDee
2011 BMY Honoree

Shoes.....

Every once in a while I come across something that speaks to where I am at the moment.  I shamelessly stole this from the internet, and have no idea who to attribute it to, but it isn't my original writing:

 

 

I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I ...can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them.

 

But once you put them on, you can never take them off.

...I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child with special needs. I will forever walk in these shoes. ~ Unknown

 

They pinch, but I'll wear them.  Forever, if that is what it takes.

 

DeeDee