Year Three, Week Forty-Nine - The Results of Nothing......

Last weeks' test results are in.  They've been in for  few days, actually, but reacting to them has taken a few days.  "Call Saturday" was what I was instructed.  The cultures were taken Wednesday evening, and likely did not hit the lab until Thursday morning.  It takes about 24 hours for the germs to grow, and another day to identify those that do, so it was a realistic piece of advice. I called at about 2 PM.  I was put on hold for about half an hour.  The staff member who took my message was pretty insistent that I give her a number that I would be sitting RIGHT NEXT TO while I waited for the return call.  Well, the cell's in my pocket - can't get much more 'right next to' than that!  At about 6PM the cell rang.  I was, of course, driving, so it went to voice mail.  I called back ten minutes later, went on hold for 15 minutes and got a very excitable nurse who told me that the cultures were 'negative.'  I've seen 'negative' mean 'your kid won't die of this unless they've had a kidney transplant or something' so I explained to her that my kid HAS had a kidney transplant and that I....no, wait...let me finish......dammit!  Back on hold because she freaked out and needs to run to ask the doctor.  Ugh.

Fifteen MORE minutes later, she comes back and very, very rapidly begins to explain that the doctor has now panicked and wants me to do......STOP!  Please, just....STOP!  I'm not a fan of running over somebody who thinks they have something of critical importance to tell you.  But I'm out of patience, and I'm certainly out of time for this nonsense, so I really almost had to tell her sit down and shut up and LISTEN!   I explained who I am and that I'm a doctor.  I explain that this isn't my first damn rodeo and I know better than anybody at any walk-in will EVER know what to do about any lab results they give me but I need her to READ ME THE REPORT verbatim so I can make some decisions.  Ah, well, then, why didn't you just say so? 

She reads the reports:  The urine culture really is negative.  And the 'final' throat culture report is too.  Goody - now all I need to do is call the team on Monday and ask, what next. 

Sunday morning I put my cell on vibrate for church and then forget about it.  Monday I find the phone and discover that the walk-in called Sunday evening to 'give me Babygirl's lab reports.'  Huh?  I have them, already, but I call anyway.  Just in case.  And......she has strep.  I'm guessing that 'final report' has some other meaning that I don't know about.  It's that ridiculous Group G strep that doesn't make anybody sick except Babygirl.  They'll call in an antibiotic tonight.  By 8:30 CVS hasn't sent me a text, so I call, and nothing has been phoned in yet.  I stop by after work on Tuesday - no prescription. 

My reaction was a testament to my overall emotional fragility.  I sobbed all the way home.  I called the walk-in, refused the option to 'hold for a moment' and insisted on speaking to a nurse. NOW.  She told me that the prescription had been phoned in at 6 yesterday.  Where did I want this to go?  Our pharmacy closes at 6, so if you do it now, there.  If not, CVS.  Hubby went to our pharmacy - no phone in.  He arrived home at 6:05, so he left the pharmacy seconds before it closed.  I called the walk-in AGAIN.  They insist that they called it to our pharmacy but they'll re-call it to CVS.  I sobbed on Hubby's shoulder so long I think he had to change his shirt.  I went to CVS, where they told me that our insurance wouldn't cover the prescription because our other pharmacy had already filled it and billed for it - what?  When??

I told them that I didn't care if the prescription was $1000, I would pay cash, delay a mortgage payment and straighten it out later but PLEASE can I have her medicine??? 

In our neighborhood, people acting crazy at a pharmacy are probably a dime a dozen but I won the prize that night.  The prescription was $43.  I was exhausted.

Babygirl's had 3 doses of it so far and still looks pretty rough.  We'll see, I guess.

DeeDee

Waiting for Nothing....

A few days ago I forced Babygirl out of bed and dug deep into whatever it is that is keeping her home from school so much.  I know we had a tough virus in January, bad enough that I called nephrology for help.  Labs were ordered, results were fantastic, and Babygirl perked up for a couple of days.  She made it to school one day.  Then we began again:  Fleeting bellyaches, sore throat, persistent headaches, body aches, fatigue, poor sleep.  So I spent roughly a half-hour with her, picking at her vague symptoms, and subtly screening her for depression. 

She IS sad, and lonely.  But when she feels well physically she is totally happy and busy.  It's a tough call.  Depression can have very vague physical symptoms as well, and good days/bad days. 

Sigh.

So last night we hit the walk-in.  Throat and urine cultures, results pending.  Physical exam unrevealing.  The docs assessment:  She looks ill.  If everything comes back negative, start testing for the weird stuff like Lyme disease and so on.  I'm pretty sure it's been done, but nephrology did say that it was time to do the weird virus screen soon so I'll toss that suggestion in there.

So we're waiting for tests that are very, very likely to tell us nothing at all, so we can call and get more tests ordered that will also tell us nothing at all. 

It's discouraging.  It make ME feel sad and lonely. 

Lord.  Please.

DeeDee

Year Three, Week Forty-Eight -Chicken Juice......

Babygirl wanted chicken stir fry for dinner.  So Hubby got out a bag of frozen chicken breasts and set them on a towel in the fridge to thaw.  Then....the next day we celebrated Hubby's birthday with a restaurant meal.  And the next night, celebrated Squeaker's Daddy's birthday with HIS favorite meal.  Believe me, the chicken was thoroughly thawed.

When Hubby went to get the chicken out to cook it, he made the horrifying discovery that the bag had sprung a leak.  There was raw chicken juice in the veggie drawer.  In the fruit drawer.  And in the bottom of the fridge.  I arrived home late from work to find him dealing with the extremely frustrating aftermath.

It's a bigger problem than it sounds like.  Our fridge is mutant-size HUGE. And it's built in - tightly.  I've been contemplating a full-out clean for a while now and wasn't sure how to move it so I could get the drawers out.  Fate forced my hand:  It had to be done.  And it had to be done immediately. 

It took Hubby and I an hour, working together, to move the fridge, get it emptied, and get it clean and disinfected. Then we had to assess the food that had been in the drawers - and throw it all out:  Every apple, each pack of organic carrots, every leaf of lettuce.

"When in doubt, throw it out!"  This is the final lesson, after they've covered all the food safety rules in the  post-transplant diet.  No matter what else you do, no matter how careful you are, no matter WHAT else, you have to toss any food that is even the slightest bit suspicious.  And food, especially raw fruits and veggies, must not come in contact with meat, even in the shopping cart.  Most of the checkout staff at our local Aldi don't scold me for pre-bagging our meat anymore.  And contaminating food that is meant to be consumed raw with a large quantity of raw chicken is beyond being 'in doubt.'  That kind of food wastage is discouraging and disheartening.

And more discouraging and disheartening?  Babygirl wasn't feeling well enough to enjoy her stir-fry, and went to bed early with a headache.  I'd throw away a lot more than a few drawers full of food to see her smiling and well.

DeeDee

Breathing....

I'm back to teaching.  It is, usually, a pleasant if challenging duty.  Somebody taught me, had patience (or not!) and helped me become a good doc.  So the payback is:  I teach.  This has both benefits and costs.

The benefit is that a good student is a joy to have - smart, inquisitive people always make me happy.  The cost is that even the best of students require time and effort, and sometimes I feel a bit short on both.  A bad student can ruin an entire month.  There's a jar on my windowsill labeled "Ashes of Problem Students."

My current student is a mix of Hermione Granger and Ron Weasley.  Brilliant, yet oddly hapless.  She has an impressive knowledge base and no idea on this earth what to do with it.  She's very concerned, to the point of correcting me in front of patients, that I may be making the wrong choices.  She is absolutely breathless with excitement when she thinks she has nailed some rare disease that I've failed to notice in a patient I've known for years.

Don't get me wrong.  There's a reason doctors get education credits for teaching.  Students are up-to-date on newer drugs.  Their memories are fresher and they know a lot about disease states in areas where progress has been made in the 25 years since I walked across the stage at med school graduation.  They are attentive because they are frightened.  They just have no idea how to use what they know.

So yesterday my student came gasping into my office and informed me that the patient she had just seen had his heart located on the RIGHT side of his body (it happens - I have one patient where this is true) and almost NO breath sounds! He told her he sometimes gets chest tightness!  He needs cardiology!  And a CT scan!  And just generally O M G!!!

"What is he here for exactly?" 

The patient came in for a chronic pain evaluation.  And to assess his depression - suicide is on his mind.  And, oh, by the way, he has a cold. 

Sigh.  I've known this guy for years.  His life is sad, his brain chemistry sadder, his depression generally not responsive to medication, and his monthly visits with me largely the entire extent of his social life.  As far as I know he has both a heart AND lungs and they function pretty well.

We go in together.  He is, as usual, happy to see me.  He is relaxed and not visibly having difficulty breathing. The light scent of alcohol in the room has escaped the student's notice, and I remind the patient that alcohol doesn't mix well with his meds.  I assess his one truly life-threatening illness and adjust his depression medications and get a promise from him that he won't hurt himself before his next appointment.  I ascertain that his chest tightness is fleeting - a few seconds now and then. Then I listen to his chest. 

He's thin, so every heart sound bounces around in his chest.  Since everybody's heart is right behind the breastbone, I can hear sounds equally right versus left, but the tip of his heart is clearly exactly where it belongs.  I teach the sheepish student how to evaluate such a patient.  Then I ask him to breathe.  I hear....nothing. 

Patients, when I ask them to breathe, very frequently start heaving their shoulders up an down, breathing with their mouths tightly closed.  This guy?  He just moved his shoulders.  I stopped, instructed him to open his mouth and taught him how I wanted him to breathe and hey presto!  Instant normal lungs.  

I think it was a watershed moment for this girl.  The sudden realization that what she knows doesn't matter in the least if she can't listen correctly was profoundly humbling.  She missed the things that could kill this man because she was distracted by her own inexperience.  It's a moment that, in the end, may re-define her. 

I was taught that the first thing I should do in any emergency is to take my OWN pulse.  Slow down, get a grip on the panic, and breathe.  How can I teach someone to breathe if I can't do it myself?

Those of us who practice medicine need humility.  We need to approach our patients not just with our heads, but with our hearts.  We need to keep a vast store of knowledge on tap, but be able to connect with people well enough to be able to spot the more subtle killers:  Alcohol abuse, depression, loneliness. We need to listen to the true hearts of our patients when they let us.  It is a profound privilege, and an honored responsibility, and it is utterly frightening.  Pray God every day that I don't miss the thing that matters.

DeeDee

Off Line.......

We've had a fairly busy weekend.  We celebrated Valentine's Day at home - somehow for the past couple of years that celebration has included Curlygirl and Squeaker.  Squeaker's daddy takes Curlygirl out a day early to avoid the crowds.  Their first-choice restaurant closed due to the storm, so they picked Sake Tume (think about it - like another local restaurant called Nezuntoz, it's all about figuring out the punny pronunciation) for sushi and dinner.  Curlygirl even managed to get a drink without being carded, which is pretty funny considering her size and the fact that she is still six months underage.

Yesterday we went to the Texas Road House to finally celebrate Hubby's birthday.  The food there is certainly tasty but I'm not convinced that it was worth sitting in a noisy, cold waiting area for an hour. But the wonderful thing was that Babygirl was ON.  We've seen her so much tired, aching, and sad this past two months that it was delightful, heartbreakingly glorious, to see her be her once-usual Babygirl self - chatty, humorous, engaged and conversational.  She and Hubby chatted about the pros and cons of various forms of anime, both agreeing that Naruto is the best, and disagreeing about the quality and interest of Sailor Moon.  Dr. Who is always part of any of these discussions as well, which led to a discussion of books, which moved to the new Chris Coffer novel which ultimately led to a trip to Barnes and Noble. 

We also chatted about our proposed road trip in the late spring.  We have so very many things on our list it may be very hard to achieve them all!  Do we want to see Disneyland in California, Cedar Park in Ohio, Universal Studios in Orlando?  Can we see family in Washington, California, Texas AND Florida?  And can we burn a couple dozen CDs with road trip music and include American Pie on each one?  And are we prepared to put up a tent every single night for three weeks?

So with one thing and another, I've been offline all weekend.  Aside from the obligatory hour of work this morning, and writing this post, I've been out. 

It's odd and a little frightening how quickly one can become dependent on social media.  I've never been good at keeping in touch, so it's great to see how people are doing, but it's very impersonal.  I wish I could have that 'birthday reminder' in my head and not on a computer screen! 

I think that for many of us who are older than say, fifty, social media seems like a fascinating but not-necessary toy.  It is, for people under thirty, a way of life.  To me it seems like an insidiously addicting life-sucking time waster. How can we be mindful of our own lives when we are alternating between adorable kitten videos and animal cruelty advisories? 

I think I'll stay offline for the rest of today.  Let my mind detoxify.  Live my actual life instead of a virtual one. 

DeeDee

Year Three - Week Forty-Seven - Snopocalypse Part 12......

This winter has been heavily sprinkled with winter storms.  (Aside:  WHEN did they start naming winter storms??)  Each time, everybody rushes to the stores for milk and bread.  Each time there's a run on sidewalk salt.  Each time, people act as if God just invented snow and no one has any idea yet if it's toxic or not.

Well, okay, I'll give the south it's due:  God DID just invent snow and who knows if that stuff causes birth defects and burns or whatnot.  If you live south of West Virginia, better stay indoors to be safe.  And eat bread and milk - it's a well-established antidote to the toxic effects of snow.

And for those in the path of an ICE storm?  Forget the bread and milk.  Stock up on firewood, sterno, and kerosene with lamps and heaters to go with.  Food is irrelevant without power and heat.  I have nothing but deep respect for ice, and nothing but sorrow for those who have already died from the ice of this current storm.

But for northerners?  Get OVER yourselves.  Put on your big girl panties and long johns, grab a shovel and for the good Lord's sake don't drive if you don't know how to handle it.  Our cupboard has flour, yeast, and powdered milk.  We have firewood and a bread maker.  No power?  We know how to cook biscuits over the fire.  No fireplace?  Our friends are welcome here.  Bring wood if you see it lying in the road on the way over - might as well assist in the cleanup effort.

Our weather forecast for the next two days has varied from no snow to as much as 18 inches as we are at the outer northern edge of this thing.  Such uncertainty in forecasting is normal here - we are between the coastal Nor'easters and northern lake effect weather, usually on the edge of one or the other.  Our worst-case scenario is getting pinned between both types of systems, but in my memory of 25 years living here, there's only been one truly HUGE storm, in 1993.  I remember sitting with my freshly shattered ankle elevated on my couch, watching the snow rise to the middle of my living room windows.  Thank God I had good tenants who dug us out.  It was a bad winter to be on crutches or in a wheelchair.

And of course no one my age who grew up in western New York State will ever forget the White Death that hit in 1977. There is no one word big enough to describe this storm. If you are short on time, skip to 3:13 for a good visual in this video:  http://www.youtube.com/watch?v=m-gRb_MuUgg  Yeah. Us geezers know snow.  So every time I hear the word "Snowpocalypse" I just laugh.  "Icepococlypse" on the other hand, is no laughing matter.  And I think it's a better word for what's happening to the south of us this week.

DeeDee

Long, Wasted Day.....

I woke fairly early this morning, and logged on and did some work-from-home for an hour before I needed to take my next dose of Stupid.  I forced Babygirl to drag her headachey self to church.  I forced MYSELF.  Life got even with me - I lay down to take a nap and woke up with a headache centered in my left eyeball.  It wasn't terrible and it went away by itself in about ten minutes so I went back to sleep. 

Hubby has a cold. Babygirl has a headache.  I feel dumb as a box of rocks - and I just now realized that I never got my Mom up this morning to take her pills, so I need to go over now and give her the entire days' worth, and no one has made dinner. 

Ugh.  Well, she always likes eggs and toast.

At least the laundry is under control, so there's some Zen, right?  And Squeaker is here with Curlygirl so there has been tickling and giggling and toddler-speak - that part of my day was AWESOME.

DeeDee

Year Three, Week Forty-Six - Stupification.....

The ongoing increase in my migraines has been worrisome.  I'm taking two migraine prevention medications daily. One of them exhausts me but since it was keeping most of the headaches at bay I accepted the trade-off between side effects and benefits.  Several other prevention medications have been utterly intolerable for someone who needs to have a fully functioning brain in order to work daily.  I discussed the situation with my neurologist Thursday morning. 

The bottom line is that we are running out of options.  I've failed amitriptyline, imipramine, Inderal, Topamax and Depakote.  There are a couple of seizure medications left.  We can't switch up the current medications without running into significant medication interactions.  And there is Botox.

Hubby's face when I mentioned this possibility was hilarious.  "Isn't that the stuff they inject into people's lips?"  Not exactly, babe, it's the stuff they use to paralyze muscles in the forehead to make the wrinkles not show.   You know, the one that leaves people with no facial expression.  Yeah.  That.

So Thursday evening I started gabapentin.  I slept like the dead and had a hard time getting up.  I got through the day at work despite the fact that I couldn't get my fingers to work correctly on the keyboard (still a problem).  I got some special kind of dizzy every time I stood up and I think I might have been talking too much.  I fell asleep last night at 9:30 and struggled to get up at 7:30 this morning.  I paid the bills but used a calculator just in case.  The dizziness wasn't as persistent today, but nausea has been.  But....

Friday afternoon I felt it... the sensation of a headache creeping up the back of my neck, aiming for the right side of the base of my skull.  It's an all-too-familiar sensation.  It's not at all unusual for a new medication to trigger a bunch of migraines before it starts to prevent them - it's a sucky reality.  So I braced myself for.....nothing. The pain bounced against the outside of my head for about ten minutes. It was as if the headache couldn't quite get INSIDE my head.

So for the time being I am riding out the general stupification that comes with every new medication I've tried so far.  Keeping my fingers crossed.  And there's still the Botox.

Meanwhile, I think I'll go to bed.  After all, it's almost 8 o'clock.

DeeDee

Squeaker....

I spent a good part of Sunday with Squeaker.  Curlygirl's little man will be two in early March.  He's fairly articulate, loves the ABC song, and laughs and laughs and laughs.  He begs for food:  EatEat! Bite? He starts games, uses the potty (sometimes).  He comes willingly to my arms and gives a hug and pats my back to make it all better.  He gives big kisses with a "MWAAH" after.  He is a loving, well-loved happy child.

He is, right now, the age Babygirl was when she came to us.  She was pale, thin, underweight.  She was sincerely mad at us for not being the foster mom she loved.  It took some time for her to acclimate from only child to youngest of seven, but she became deeply attached to all of us, with all her heart.

Curlygirl was tougher.  She'd had two families before us, spending two years with each, and she fought loving us with all her might.  After all, the people she loved all disappeared, not once, but twice.  Connections built slowly, very slowly.  Trust, slower still.  There almost never was a time when I could just grab her and tickle her just to listen to her laugh.  She wasn't one to cuddle and fall asleep in your arms. 

But at the age of 18 she became Squeaker's mom.  And in Squeaker I see her little face with all the walls down - relaxed, unguarded and loving.  And I see it because that is what she's become.  Squeaker has done what small children do best:  Peeled away all her defenses, leaving her with the knowledge that her heart is now walking around outside her body on cute little chubby legs.

Hubby and I are frequently told that we are wonderful because we love kids we didn't give birth to.  We aren't wonderful.  We struggled, cried, and frequently parented badly.  Most people understand how you can love a child - it's like loving a puppy - they love you back.  Fewer people understand how hard it is to hang in there when it seems that the child doesn't want you to love them.  It makes it all the sweeter when things finally change.

DeeDee

Second Anniversary......

Two years!  I've had a few people tell me, "It seems longer than that somehow."  I understand why.  We've had two years packed with the fallout of a kidney transplant:  Medication side effects, hospitalizations, financial catch-up, Make-A-Wish planning and travel. 

I wish I could honestly say that things are better now than they were before the transplant, but I can't look at her school record for these past two years and imagine that she is healthier than she was in the two years before the transplant.  Sure, dialysis sucked.  And we were living an ignorance-is-bliss life before she went on dialysis.  I must say it's easier living with a chronically ill child if you haven't noticed yet that she IS ill. 

Perhaps if we'd been stuck on dialysis for two years instead of the blessedly few months we were, I'd have a different view of her overall 'healthiness.'  She's been a transplant recipient nearly three times longer than she was a dialysis patient.  The memory of the ugliness of that time is certainly fading, but she is still suffering nearly everyday.  Headaches, bellyaches, mild viral illness that take WEEKS to clear....

I don't want to appear ungrateful for the transplant - I'm not ungrateful.  But it didn't fix my Babygirl.  I've seen blogs by kidney transplant recipients who also to struggle with what I'm feeling right now:  How do you admit that life will never be what it was, ever ever again?  How can you properly mourn what you've lost when you're supposed to be feeling happy for what you have?  Is it wrong to wish things were different, or that time would go back?  There is no way to describe how angry I am that my child was born into the wrong gene pool:  That she pays every day for something she has no control over or responsibility for.  I am guiltily grateful for not being the one who gave her those genes, grateful for not needing to bear the feeling of any personal responsibility for making her sick. When I really let these feelings loose, I'm stunned by the depths of my grief.

DeeDee

Grieving for Two Years.....

Babygirl's kidney donor died two years ago today.  According to his parents, Jorge was a joyful, lucky, blessed young man.  According to his pictures he was a beautiful child and a confident young adult.  He and Citygirl are about the same age. 

I no longer see him in the light of "Someone had to die so my kid could live."  I see him living on in Babygirl.  And the reason I can see it that way is because his unbelievably generous family sees him that way.  The thought that she and many others like her live because of him gives them the ability to find meaning and comfort in his death. 

I cannot imagine that the act of "finding meaning" makes their loss any less profound or heart-rending.  I'm a mom.  My heart would be ripped out of me if one of my children died, and I don't think any amount of "meaning" would make my suffering less. 

So I do what little I can for them:  I let them know that Babygirl is doing better because of Jorge's kidney.  I let them know that the flowers on the altar at church yesterday were in his memory.  I let them know that as long as there is breath in my body I will not forget what their bravery has done for our beloved Babygirl, and that there are many, many people that they have never met who pray for them in their sorrow on this day. 

Take a moment:  Pray for them, please.

DeeDee

Year Three, Week Forty-Five - Sick Eyes.....

Wednesday morning I called the transplant team and babbled like an uneducated idiot to the nurse practitioner about how Babygirl's simply not been well for a month.  She, Hubby and I all came down with the same energy-sucking body-aching whateverthehell virus after Christmas.  Hubby and I recovered - slowly! But Babygirl just dragged.  And dragged.  And dragged. She's not been eating well. She's been sleeping all the time.  She's been out of school entirely for nearly 3 weeks.  I think she may have attended twice since Christmas.  And the best thing I could say to the practitioner to describe all this?  "She has Sick Eyes."

Moms everywhere know what I mean.  I can't describe it, but every kid who is genuinely not feeling well gets a 'look' to them.  Teething kids do not get "Sick Eyes".  Kids with colds do not get "Sick Eyes".  But a kid with strep throat, the flu, chicken pox?  They get 'em.  And moms KNOW. 

The nurse practitioner faxed me some blood work orders.  The labs all came back fine, even better than fine - creatinine a commendable 0.9, hemoglobin a remarkable 11.9 (personal best for Babygirl, I think).  They did levels on medications that could be making her feel crappy - all okay. 

All mothers also know that one of the fastest cures for a sick child is to take them to the doctor.  Whether or not the doc actually DOES anything is irrelevant.  Moms inevitably panic about five minutes before the kid is going to get better anyway.  In Babygirl's case all I needed to do was bleed her, apparently. 

So on Saturday Babygirl awoke clear-eyed and with a good appetite.  She came to church to help the mission team with a fundraiser for a few hours and returned exhausted but in good spirits.  She woke up looking well this morning.  I'm hopeful that she'll be heading back to school tomorrow - she's terribly behind, and the school is behind on tutoring.  It didn't help at all that her favorite teacher died of a heart attack last week - it understandably threw his colleagues and students into an uproar that made it difficult to get the tutoring team here. 

Being sick myself was exhausting.  Working short-staffed is daunting.  Doing both with an extra layer of vague but acute sickness in your chronically ill child is terrifying.  My greatest fear is that someday I'll be so distracted by home or work that I'll miss something life-or-death in either location.

DeeDee