One Great Teacher.....

There has been a sudden, 100% turn around in Babygirl's home teaching.  Last Monday, Ms. T arrived.  She's Babygirl's math teacher, and up until now she's not been involved in the home teaching situation.  But she noticed how lost Babygirl was on the few days she was in school, and since math is the one class that we've been told she's absolutely, positively 'caught up' with, that says something.  When Ms. T discovered how little home teaching she was getting, she met with the assistant principal and offered to take over.  There is now a schedule of teachers for every day of the week.  There is now a written notice to the school, the special education (Ms. I-speak-to-parents-slowly-in-words-of-one-syllable) coordinator and the medical department that Babygirl will be getting two hours per day of home teaching whether she manages to actually attend school or not.  This plan will be reviewed at the end of March.  From now until then Babygirl will have received more home teaching than she has gotten to date even if we count last year.

Ms. T is aware that Babygirl knows almost nothing of the material she missed last semester, and admits that at this point doesn't know how to address that loss.  But she HAS provided us with textbooks - three physical texts for at home and access to another text online.  We also have a website that supplements school lectures, and a CD-ROM with one teacher's entire set of class lectures recorded on it (from the school site that we couldn't connect to from OUTSIDE the school.  She is nagging the gym teacher. Her empathy for Babygirl's plight will not devolve into pity. This is the end of the "you make honor roll because you're sweet and I feel sorry for you" (although the special education teacher still decides what grades she gets, which is interesting).

My phone call to the school is not what started all of this.  It admittedly made it easier for her to get what she is asking for, since I gave the district what-for ahead of time.  But Ms. T started all this not knowing about my call.  And that's the difference between a good teacher and a great one.

Babygirl's tutor teacher is a good teacher.  She's tried, she's been there when she can, and she's gone above what an average teacher might have done.  But Ms. T (who had been out herself much of last semester on a personal leave) saw what was happening and became outraged rather than hopeless. The list of people she called far exceeded mine.  I set up the pins.  She rolled the strike.

Of course, I can't possibly just sit back and enjoy this.  Hubby and I spent over an hour last night configuring the laptop (%(#&%#@*^! Windows 8!) so that Babygirl can easily access the sites she needs, loading up the addresses into her 'favorites' lists and putting passwords where she can find them.  And now I'm hoping that she'll feel well enough to manage the new workload, although she managed it all of last week, losing track only of her weekend assignments. 

It's an amazing 180. 

DeeDee

It's Taxing.....

Since I had the afternoon off I figured I be as productive as possible and go through a years' worth of papers, receipts and calendar records to get everything ready for our tax preparer.  I started at one.  With a one our break for dinner and some homework with Babygirl, I just finished.

There was the usual stuff - mortgage, work expenses, rental property maintenance.

Then there was Babygirl.  Kidney transplants don't come cheap.

To be completely honest, it wasn't just her.  Hubby and I have our own medical issues and prescriptions, and of course the cost of our health insurance (not counting the Medicare premium) would be the same for the family no matter what.  But those costs together never add up to enough for us to deduct them.  I think we made it this year, though.

I'll start at the bottom, with the lowest deductible expense: Pharmacy.  We filled nearly 200 prescriptions and paid $1396 in co-payments.  Remember, for most of these we get a three-month supply.

Next:  Travel.  Tolls and parking are deductible ($626), but gas (oh don't even start) is not.  Some tolls we failed to get receipts for, and some were donated by those from whom we borrowed cars since they wouldn't let us pay back on their Easy Pass bills, so the total would have been much higher.  Mileage came to 14,701 miles, which is a deductible of $3381, for a total of $4007.

Close behind this?  Health insurance premiums (medical, dental, vision, Medicare) at $5413. 

The prize winner:  Medical co-payments and deductibles.  The total of $8140 didn't particularly surprise me.  It would have been MUCH, much higher if Babygirl didn't qualify for Medicare. And we pay $100/month for that coverage (which is added up in the health insurance premiums above). 

We have a pre-tax medical spending account and make the maximum contribution, so $2400 cannot be applied to the medical deduction.  So the total is $19,157, $16,757 of which is 'deductible.'  This is well over what Hubby made at his part-time job in the same year.

How much of this will actually be deducted depends on what our taxable income turns out to be, but be assured there WILL be a sizable deduction even after we subtract 10% of that total.

There is more to the finance of this problem than this, of course, but that's a topic for another post.

DeeDee

Who Needs Sleep.....

Me.  I need sleep.  But I am in another of those bouts of insomnia that, in a limited way, encourage some productivity at the beginning of the day (say, 3:30 AM) at the expense of any hope of accomplishing anything after 6:30 PM.

I never really have any idea why I can't sleep.  But I'm sure I'm tired of it.

DeeDee

Best. Hubby. Ever........

Apparently we aren't quite busy enough.  This month, due to a housing crisis, Boo and JuJuBee moved home for a few weeks.  And starting Monday, Curlygirl is starting a nine month cosmetology class, and SHE has a daycare crisis.

Social services will help young mothers pay for daycare if they are in high school, in a GED program, or working.  They will not offer daycare assistance moms pursuing higher education.  Daycare costs about $30/day.  Squeaker's dad works full time and supports them, but they can't come up with $600/month over the costs of rent, food and utilities to pay for this.  She's got a partial scholarship and has lined up student loans, and tried to get a place for Squeaker in a co-operative daycare where they could trade volunteer hours for free care.  She was prepared to leave home at 6 AM, volunteer at the daycare for two hours, do a full day of school and make it home by 6 PM, but there wasn't a space available for him there.

There's a spot in a local home daycare but he can't stay past three, and the cost is prohibitive.

In steps Hubby.

"I can take him Monday and Tuesday, and pick him up at three."  We're paying for half of the daycare cost on the other three days ($45/week) and Curlygirl is picking up the rest.  Knowing that Babygirl is going to need to be in the hospital next month makes this nothing short of heroic. 

We learned long ago that we can handle anything for a year.  Aunt Mary, foster kids, dialysis - it's all doable if you figure you only have to do it for a while.  So until the beginning of November, Hubby will be working part-time, doing Grampa Day Care part time, and being Dad to a special needs kid full time. We are planning to take Squeaker and Boo the beach with us.  It'll be fun to have some Sandpipers again!

There are no limits to the reasons I love this man.

DeeDee

Weekend in an Evening.....

Yesterday I arrived home to discover that the dining room table had ALL the leaves in.  And it was covered in pizza boxes.  And it was surrounded by family.  And then an old friend from High School popped out of the kitchen: "Surprise!"

What would have been an ordinary weeknight turned into a weekend.  No, a vacation day!  Pizza was eaten, wings enjoyed (well, not by Boo - spicy doesn't work for her yet).  Stories of times that feel like just a moment ago but that predate the birth of more than half the people at the table.  "Remember how our social studies teacher thought we were the cutest couple she ever met and always let us leave even though we didn't have music lessons and we weren't actually EVER a couple?"  "Remember the roller-coaster roads and how we used to drive?"  "Remember......?"

The kids seemed bemused by the idea of all of us adults being in High School.  They listened to the stories, and laughed at what we used to get away with. 

And then the guitars and the wine came out.  Folk songs, silly songs, songs about life and death and making love and friendship, all with two to three guitars playing and three or more part harmony.  Laughter.  Joy.  Peace. Friends.   

I'm not sure when we went to bed, but it was reluctantly, and late.  And despite the lack of sleep (and the wine!) I was energized in the morning, and survived a busy day at work. 

People ask Hubby and I how we "deal with everything."  It isn't easy, not at all.  But nights like last night make it possible to continue hoping and keep moving down the road we travel.  A few hours can make a world of difference.

Thanks, guys.  Thanks.

DeeDee

Week Ninety-six - Edjamacashun......

Tuesday I called Ms. M, the person I am told is the coordinator of special education services to discuss Babygirl's education, or lack thereof.  I described the situation to her as I see it:

Babygirl is entitled to two hours per day of home teaching from the school for each day she is out for medical reasons.  She's been out for over two months and did not get anywhere close to this amount of home teaching.  When she took exams with her class on one of the few days she managed to go to school she came home feeling like a failure, worried I'd be mad at her for not passing any of the tests.  Since she's been feeling a little better and going to school once a week or so, she's gotten almost no teaching because her IEP says she needs to be out for three days in a row to restart home teaching.  So I can either keep her home when she feels well (which is just plain stupid and would make her isolation compete and hopeless), or I can send her and guarantee that she won't get ANY schooling.

Ms. M spent roughly twenty minutes explaining to me in exhaustive detail (and in words of one syllable) why this is not her problem.  This is not a special education issue.  Babygirl's IEP is really not at all about the fact that she is sick, exactly, it's about how she needs extra help because she is not passing the state tests AND she happens to be sick.  The 'sick' part is handled by a different department and if we are having trouble I need to take it up with them.  It seriously took me that entire twenty minutes to get the name and number of Ms. D, the person who IS in charge of the 'sick' thing.

I faxed the latest doctor's note to Ms. D and left a voice mail asking her to call. 

This morning we had a chat.  I explained the who/what/where/when/why as best I could, since apparently educating my child is the most labyrinthine process on the planet.  I explained why the homework hot line is useless to us since we have no textbooks, lesson plans, handouts or organization to help us interpret the instructions.  I told her that we cannot connect online to the few video lectures available for one of her classes and that her tutor cannot figure out why.  I told her that I've been told that the school lacks the 'technology' to download things onto Babygirl's Nook or my computer.  I explained how the school has told me "they don't have enough teachers available."  I explained that we might have a fairly extensive hospital stay in front of us, and that Babygirl would be well enough to learn and do homework during that time if we just could take the right things with us to Philly.

Her response was, "Babygirl has enough struggles with her life.  This should not be one of them."  She had already passed the latest doctor's note to the school doctor who simply said that of course Babygirl should be on home teaching as needed for her medical condition.  And the school already has her listed as being on home teaching.  So then why can't we get a tutor every day that she needs one without the three day lag? 

There should be no lag.  She should take the same tests as her peers and pass them.  She should be free to attend school for socialization purposes when she is able but her main education should be happening at home.

Let's see how this shakes out.

DeeDee

The Lighter Side of the Journey.....

You can't complete a four hundred mile round trip journey without running into at least one moment of complete, well, idiocy. 

Babygirl LOVES Perkin's Restaurants, and there are none locally.  We do, however, regularly pass at least one on our journey, and it has become our lunch-on-the-way-home place.  They are the only place I know that will serve French toast with a side of asparagus.

The first time we stopped there, Babygirl ordered pancakes.  When they arrived, she was delighted to discover that they come with a cute little scoop of ice cream on top.  Before I could intervene, she spooned the whole thing into her mouth, discovering just a moment too late that it was a cute little scoop of BUTTER.  I confess, for me it wouldn't have been a huge problem, but she is NOT a fan of butter at all.  Her face as she struggled for some polite way to rid herself of an entire mouthful of it was entertaining, at least from my side of the table.  We (I) still giggle about it, but she now usually remembers to ask for "No butter please."

Eating out with the two of us is challenging.  I have a severe food allergy to citrus, so lemons and oranges are an issue.  Since so very many restaurants casually toss lemon wedges into their ice water and orange twist garnishes onto random plates of food, I have to be very pro-active with wait staff.  And Babygirl cannot have any food that carries a germ contamination risk, so no raw veggies, garnishes, cold cuts or uncooked food of any kind.  And once again, since restaurants slam a piece of parsley onto anything for decoration, I have to be pretty aggressive about this as well.  I also have to instruct the wait staff that the kitchen staff MUST re-glove it they are switching from salad prep to Babygirl's plate. Perkin's usually has no problem at all accommodating this. Burger King is universally awesome. Some restaurants make us feel like circus freaks.

Yesterday's waitress was of the you-are-a-circus-freak variety.  As I was explaining my allergy, she interrupted with, "Well, you don't plan to ORDER any of that stuff, do you?"  Since lemon juice is a hidden ingredient in most salad dressings, salsas and marinades, I don't know unless you tell me whether or not I'm ordering a potential death sentence, but hey, I'll do my best not to inconvenience you.  When I began on Babygirl's list of issues she literally threw up her hands and said, "I'm going to get the manager."  Now, it's not unusual for a waitress to consult with the manager about our food problems - it happens all the time.  They just don't usually make such a production out of it. 

The manager arrived, and listened to our list of 'can't haves' as respectfully as he could given that the waitress kept demonstrating her IQ with additional questions.  The one question that REALLY made me drop my jaw was, "Well, you know we use RAW EGGS to make French toast!"  I simply stared at her in astonishment.

Um....... ALL food is raw before it is cooked.  I held back from saying so because just THINKING that thought seemed so stupid that I just could not bring myself to say it out loud. I had to forcibly pull my chin up and shut my mouth.  I didn't get a look at the manager's face, but he went to the kitchen to instruct the staff, so at least I know SHE wasn't doing it. 

My sense of humor was running on low before lunch.  By the time we arrived home, I could laugh about it, and Hubby just roared when I told him about it. 

But next time we stop, I'm not letting her wait on us.  She won't want to anyway.  She did not get a very good tip at all.

DeeDee

Antibodies.......

It's been an incredibly long, disorganized day. 

Traffic was very light because of the holiday, the biggest blessing of our day. 

After blood work, I sent Babygirl back to nephrology to start her appointment without me.  I took her headache diary and hiked over to neurology, where I had thought we were supposed to see the doctor today but found out two weeks ago that we aren't to be seen for two more MONTHS.  I asked to see the nurse who arranged for all of her tests.  I explained the timing of the medications vs the frequency of the headaches.  I explained that although we've "improved" from almost-daily headaches to roughly every-other-day headaches, she's missing a TON of school.  I asked her to run interference for us with the doctor and try to communicate something of the urgency of the situation.  She was astonished by the lack of communication, and a bit appalled when I told her that I didn't really feel as if anyone wanted to hear from us, for good or ill.

Back at nephrology, Dr. A went over the test results.  Her creatinine is 1.1, much improved and more typical of how she was when she was on the tacrolimus last time.  The antibodies against the new kidney are an enormous problem.  She showed me the readouts, which the lab configures in several different ways for clarity.  But it didn't matter how you look at it.  It's bad.

There are six tissue antigens involved in 'matching' a donor to a recipient, in addition to the blood type antigens (A, B, O, pos/neg and a bunch most people have never heard of).  Babygirl and Jorge were a blood type match.  They were NOT a tissue match on ANY of the six.  The decision to give her this kidney was multifactorial:  Kids die on dialysis (it happened to another child her age locally while we were waiting), and the newer anti-rejection medications reliably prevent antibody production in the majority of transplant recipients regardless of the degree of matching.  Babygirl just happens not to be one of them.

These antibodies are problematic in a million different ways.  The obvious problem is that it is the job of an antibody to remove whatever it is sensitive to from the system.  This is a great thing when a chicken pox antibody removes chicken pox virus and keeps you from getting sick.  This is horrible when the antibody is against something you desperately need, like a kidney.  Another problem is that when she gets her NEXT transplant, she's going to have to wait for an exact tissue match, since she'll already have antibodies against anything else.  That narrows the field considerably, and makes the next wait MUCH longer.  And finally, it means that she can't be enrolled in any experimental medication protocols, which dramatically narrows future choices if she isn't tolerating her medications.

We spent half an hour on a compliance study update, and some time getting some suggestions from the social worker about dealing with the school.

Then we left to come home.  On the way home I got three different sets of phone calls from doctors.

Nephrology:  For next month's visit, they are scheduling a biopsy.  And where we go from there depends on the results. It could be an overnight stay, or a major admission.

Neurology:  Start tapering the old medication downward, and cross-taper the new medication upward, and call in three weeks if things aren't improving.  Oh, and here's the name of the person who coordinates out-of-town patient appointments, which CAN be set up more than two weeks ahead, and here's the number for the FOUR triage nurses who would be happy to talk to you anytime you are having a problem (um... ya think you could have given me THOSE little gems of info four months ago??).

Mom's doctor:  Go over to your Mom's house and resort her pills to new doses - her kidney (yeah, she only has one also) is not happy with her meds.  Oh, and weigh her every day so that we know that her heart isn't unhappy with the change.  Yeah.  I'll just fit that in......between driving, stopping at Barnes and Noble to straighten out a problem with Babygirl's Nook, and picking up her new meds at our pharmacy before it closes at six.  Oh, and we found out today that Babygirl is now restricted to one month supplies of her medications and no one knows why.  I'll fit figuring out what to do about that into my work day tomorrow along with reminding nephrology to get prior authorization for the biopsy this time.

Bedtime can't come too soon, but I think I'll have trouble sleeping anyway.

DeeDee

PS The debit card was between the door and the seat of my car.  It must have fallen out of my pocket.

Thinking Ahead.....

I slept in until six this morning, got up and did laundry and dishes and enjoyed coffee over This Old House magazine.  At seven I woke Babygirl for her meds and asked if she wanted to go shopping with me.  It was gratifying to hear a "YES!"  and see bright brown eyes eager for a chance to get out of the house.

We started at Walmart, picking up cleaning supplies, grandbaby snacks and a new shower curtain among many other things.  We even found an Easter dress for Babygirl!  When we went to check out, I discovered that I didn't have my debit card.  Hmmmm..... where did that go?  I paid by check. 
We went out to breakfast, went to the bank to get some cash (another check), shopped for groceries and Aldi and came home.  It was a completely mundane morning.

We don't get much 'mundane' here.  Having a meal with a happy kid with a settled stomach was wonderful.  Sharing conversation.  Laughing.  Discussing college, car preferences, music and clothes.  Listening to this blessed child discussing her future as if there were never any doubt that everything is going to be fine and that her Red VW Bug is just waiting for her to turn sixteen. Managing four hours without fatigue or pain is a miracle to me.  Hearing her thinking ahead with such hope squeezed my heart with a joy so intense it was painful

The rest of the day passed in the company of family.  Squeaker's dad and I went out to donate blood, and came home to celebrate his birthday with his favorite meal of (shudder) boxed mac-and-cheese and hotdogs.  Games were played.  Laughing children were chased in circles. 

Babygirl just came in to say goodnight.  Her eyes were still bright and clear.

The sweetness of an ordinary day is something that I confess I have under-appreciated all of my life.  The race from one extraordinary event to the next, daydreaming away the beauty of today for the hope of excitement tomorrow; losing along the way the moment-by-moment joy that comes from simply being present in my own life. 

I promise, God, that if we ever resume ANYTHING resembling a normal life again I won't take it for granted.

DeeDee

PS. And if you'd point me in the direction of the missing debit card I'd appreciate that too.

Frugality.....

Part of my job as CFO of the family is to keep up on bills, medical billing statements, and the general who-owes-what-to-whom that makes up modern life.  Is this cable bill accurate?  Why does the doc say we owe $75 when insurance says they covered it?  What's with the extra copayment for that x-ray?  And when was the last time we let the gas company in to read a meter???  I spend one morning every two weeks taking care of our finances, with extra phone calls to various places fitted into my work day.  Those phone calls save me an average of $100/MONTH.  And then I do the same for my Mom one day a month.  And then, of course, I need one entire day per year to figure out taxes.  I haven't gotten to that yet, although it would be to our great benefit if I could do it SOON.

This morning I got the bills paid, and then got distracted for about an hour by a minor financial matter:  Gift cards.

There is an entire section of my wallet dedicated to gift cards.  Right now I have two Verizon rebate cards, a Christmas Tree Shops card, a Target card, an AMC card, a Dandy MiniMart card, and two Dunkin Donuts cards.  They total $184.27 (there was an additional $1.08 but I bought a McD's coffee on the way to work after I discovered how rich I am LOL).  I also have cards for free coffee at CHOP, a free Italian ice locally, and frequent buyer discounts at a couple of my favorited shops.

It is estimated that approximately $2 BILLION dollars is wasted annually in the US because people do not use up the balances on gift cards.  I plan to not contribute to that number if at all possible! 

It can be challenging.  The rebate cards, for example, will work until whatever it is I want to buy exceeds the amount on the card.  Without going online or placing a phone call, there is no way to know what's on there.  And if a gift card is for somewhere I don't go very often, it's very easy to lose that last few dollars simply because I don't know how much is left.

I don't do coupons.  I haven't got the time or the inclination.  But I do pay attention to things like the gas discount our local grocery gives for spending money there.  And they give the gas discount on your entire purchase, including gift cards.  So if I'm going to go to Dunkin Donuts periodically anyway, it makes sense fro me to buy myself a gift card to get the discount - provided I use the entire card.

Knowledge is power.  I now have the balance written on the back of each card so I don't forget what they are worth.  Some of the balances are so small it almost seems silly, but if I'm willing to pick up a penny off the ground when I see one, I should be willing to use up those balances!

DeeDee

Week Ninety-four - Fasting.....

Ash Wednesday was last night, and a new Lenten season has begun.  The tradition of 'fasting' is upon us, and there is much to consider when discussing meaningful Lenten discipline.  I'm Protestant, and didn't grow up with the idea of "giving up" something for Lent, but as an adult I've come to see that participating in some form of new discipline does help focus our hearts spiritually.  Disciplines aren't always about "giving up" something. They can also be about "giving" something. 

I've looked at it from both perspectives.  It seems to me that the disciplines I've failed at all centered around me - giving up certain foods with an eye to losing weight, exercising for the same purpose, and other similar ideas.  The disciplines most likely to work are those that focus outside of myself - service, kindness, giving.  Since the point of all this is to imitate Christ's 40 day fast in the wilderness to prepare for His active ministry, one would think that I would have come to this rather obvious conclusion somewhat sooner. 

So when Babygirl and I discussed this on our way home from church last night, we tossed out a variety of options.  She didn't want to give up chocolate - after all, today is Valentines Day!  We discussed the basic self-centeredness that begat that thought, and tossed around some other options, and I came back to where I was last year.  I'd like to fast from meanness.

While the 366 Random Acts of Kindness blog is no longer in business, having completed its full year purpose, the concept remains in my heart still.  So, once again, I am going to aim for a random act per day for the season of Lent, and I'm encouraging Babygirl to try it too.  It's a mean world sometimes.  We can make it better.

DeeDee

Honor Roll....

Babygirl made Honor Roll at school with a 90.83% average.  If she'd gotten .17% more she'd be on High Honor Roll. I'm extremely proud of how hard she works despite all that she goes through every day.  I'd be positively jumping for joy if I thought for one minute that these grades had any real meaning. 

The report card shows she's missed at least 54 days of school.  Comments from teachers range from "Excellent" in PE (gym) class (really?  Excellent?  How on earth does a child who has not darkened the door of the gymnasium get 100% in gym class??) to "Consistently well-behaved and respectful."  Again - if you have never laid eyes on the child how do you know she's respectful?  I guess she can't disrupt the class if she isn't there, so she isn't DISrespectful.  Several classes note that she is on home teaching and that her grade was provided by her home teacher.  Considering how little home teaching she is getting I'm hard pressed to explain how those grades are derived.

She's completely exempt from classes like music, shop and home ec.  If she has a grade in those classes it's from whatever limited work she did on the rare days she's been in school.  She is not required to take a foreign language, and if she is in school that extra time is used for a support class.  Her tutor insists that she is caught up (or was prior to winter break).  Babygirl tells me that on one of the days that she DID make it to school a couple of weeks ago she had to take a lot of mid-term exams, and that she knew nothing about the material on most of them and felt she had failed them all.  I don't see that failure reflected on this report card anywhere.

Don't think I wouldn't be the proudest mom on the planet with these grades if I thought that Babygirl had actually earned them.  She's never been an Honor Roll student, and I've never cared because I knew her grades reflected a lot of hard work on her part.  She's always done her best, and still does.  But my gut tells me that she is getting farther and farther behind, and her response to her one day of testing with her peers confirms that.

My ongoing concern is that she will have no foundation laid for the next level of classes.  I don't want to face almost certain failure later on because she is not being kept up on things now.

I have the name of someone higher up the food chain in special education.  Call going out!  Wish me luck

DeeDee.

Letting it Settle.....

We've become sadly accustomed to bad news about Babygirl's health.  Each time we get hit with something new, there is a process of absorption.  I think, for myself at least, that I no longer run through all of the five stages of grief every single time anymore.  It's not that we don't need to grieve.  We do.  We just don't have the energy.

At this point, my imagination sees Babygirl's health as a big dirty pond. We are riding a leaky raft and trying to stay afloat and drain the pond at the same time.  We clean up one area, drain it out; then it rains, it refills, and we carry on.  Floods come and go.  The raft leaks, we bail, mend and move on.  And we periodically re-accept the reality of the situation - there is no real way out.  As God said to Noah (via Bill Cosby), "How long can YOU tread water?" 

The best we can do with any new piece of bad news is to let it settle to the bottom of the pond with all the other muck and keep paddling.

DeeDee

The Conversation......

Heart attack.  Pneumonia.  Parkinson's disease.  COPD.

It's not a good line up.  They are transferring my dad to the big city tomorrow for cardiac catheterization.  He had six bypasses 13 years ago, and has a pacemaker/defibrillator in place.  He's tired.  He's discouraged.  And he knows that the Parkinson's is going to continue to limit his mobility and his independence.

"How do I go about getting a DNR order?"

Sigh.  It's not that he's giving up entirely.  He wants to have the cath done, although he's not sure what he'll decide to do if they need to do surgery instead of, say, angioplasty or stents.  He's taking his meds, but he's ready to make the tough choices.

It turns out he doesn't have a health care proxy.  He's never thought about things like ventilators, feeding tubes, hydration, vegetative states.  And he wasn't up to discussing all of it, but he's thinking about it.

So now I have yet another health care proxy form in my collection.  And there's a DNR order on his chart. 

Sigh.

DeeDee

Week Ninety-three - A Bolt From the Blue.....

Did you know that lightening can strike on a blue-sky sunny day?  It isn't common, but when it happens it is called  a "bolt from the blue."  It's name has become synonymous with uexpected events, but most people fail to remember that it still means "I've been struck by lightening."  Struck by a Bolt on a bright, sunny, safe day.

Phone calls can bring such strikes.

Dr B. called me right before lunchtime.  I had already received Babygirl's Monday lab results from the team, and although no one was happy with her creatinine, the plan was to observe and repeat in two weeks.  So an unexpected call from the transplant lead physician sent my heart straight up into my throat.

"You know that we periodically check for antibodies that would indicate that Babygirl's immune system is reacting to the kidney transplant."  Yup, I know.  And last I knew there weren't any.  Apparently I was under-informed.  The first couple of times they tested there were no antibodies.  Last time, there were a few.  This time, the number has risen.  This is not good.  Babygirl's immune system knows that the kidney is there and is preparing to destroy it.

The call was informational only.  Nothing will be done at this time, and the kidney will be observed for additional signs of stress (protein in the urine, increasing creatinine).  In time (when, he couldn't say) she will need another biopsy.  Based on results, they will institute more aggressive therapy.  The plan is to remove the antibodies from her bloodstream using plasmapheresis, the same basic technique that the Red Cross uses to harvest platelets from donors.  Then they will inject her with anti-antibody antibodies (follow that?) to remove more of them.  Then there is another medication they can use, but they'd rather not.....

Bottom line:  Rejection is inevitable. 

This, of course, was true from the moment the kidney was placed.  The time frame was unknown, but all transplanted kidneys eventually die.  Now it seems unlikely that we'll be the ones who keep a kidney for 15+ years.  And no, this information did not come with a useful timeline.  It's not Dr. B's style to be pessimistic or discouraging, but I know bad news when I hear it.

I'm guessing that the real purpose of this call was to give me lead time.  Any time a doctor gives a patient bad news, every bit of information that follows resembles a lecture by Charlie Brown's teacher:  Wah Wha,   wahwha wah wah wha.  I'll be able to hear better and follow instructions more accurately if I get that reaction out of the way BEFORE our next visit.  I'll be easier to deal with if I get hysterical on my own time and get it over with.  Or something like that.

This is not easy news to digest. especially since it was my second Bolt in less than one day:  My dad had a heart attack yesterday and is in the hospital, also fighting pneumonia.  We're in the midst of Winter Storm Nemo - who knows if I'll be able to make the four-hour run into the snow belt tomorrow.

DeeDee

Frequency.....

Those of us who regularly ask people to rank their pain severity understand the limitations of the 1 - 10 pain scale.  A lot of people just don't get it.  I hear daily, "It's more than a ten."  "It's a one hundred."  Clearly, if ten represents "the worst pain imaginable," there cannot be a higher number.  Three or less is pain you can live with without difficulty.  Four to seven interfere with daily activities in a significant way.  Eight to ten puts you down.  There's no functioning with a ten.

I looked throught Babygirl's headache diary calendar this morning, full of the big black "X" marks that signify headaches greater than five on the one-to-ten pain scale.  We started keeping track in November.

In November, she had five days that did not have X's.  In December, six. January was better, with eleven days without five-plus headaches.  That's headaches 82% of the time for two months, and "only" 66% in the "good" month.  Of course, if she had 11 days headache-free in November and December, and 11 in January alone, one could argue that this represents a 100% improvement.  Or not.

Please keep in mind that on the vast majority of the unmarked days, she rated her headache at four or less.  Literally translated, that means that almost NONE of the days were truly headache-free.  She had more than one stretch of five-plus headaches that ran for twelve days in a row.  Twelve.  Days.  And remember, she's got a REAL pain scale.  She truly 'gets' what the numbers mean in terms of both intensity and function.  Most of her headaches are in the 6 - 8 range. 

February is looking about 50/50 so far.  School Monday, home yesterday and today.  It's not good, but it's better. 

It still doesn't seem like it should be this hard.

DeeDee

Creatinine Update....

Babygirl had blood work done on Monday.  Her creatinine is 1.3.  While that IS an improvement (barely) from last weeks' 1.4, it still stinks. 

But the transplant team deserves some credit here.  They asked how the headaches were doing.  They respected the fact that SHE'S doing better even if the kidney isn't.  They told us to keep an eye on her and to come in as scheduled in two weeks with no additional interim blood testing.

They believe that a functioning child is at least as important as a functioning kidney.  They're willing to wait it out for a bit, thank God.

I called to schedule her next neurology appointment to try to match it up to nephrology.  They wanted her to come on Wednesday, two days later.  Ummmm.....no.  And then they said never mind, come in two months.  But I can't schedule THAT until two weeks ahead.....

Seriously?  And that call took just over 18 minutes.

In other news, I stumbled over this blog today:  http://oknak.wordpress.com/tag/scott-parker/.  It's a rather interesting view of pediatric transplantation in England.  Their journey makes ours look like a well-coordinated cake walk. 

You don't have to look far to find people who are suffering at least as much as you are, if not more so.

DeeDee

And a Year of Rejoicing.....

Happy New Kidney Day, Babygirl! 

Last year we watched the Superbowl only moments after being discharged from the ICU.  Babygirl had the astonishing four-gang IV pole and innumerable bags, drips, pumps, monitors all still doing their thing.  We shared homemade lasagna and veggies with nurses and family and rejoiced despite our exhaustion.  

While the year has had significant ups and downs, I remain optimistic and hopeful about Babygirl.  While she hasn't been up for skiing yet this year, her headaches ARE calming down and she is resuming some more normal activities.  She attended school two days last week, and would have managed three if there hadn't been a snow day.

Yesterday she went to the movies with friends.  This morning she is headache-free.

Miracles aren't the big things, they are the ability to enjoy the small, everyday things.  So many times in our lives we are deceived into believing that our happiness depends on some future event - going on vacation, getting a bigger and better house, keeping up with the Jones', winning the lottery.

If this past 93 weeks have taught me nothing except to appreciate and rejoice in what I have, then I am truly blessed.  I have joked that the key to a great day is to lower your expectations, but I don't mean that exactly.  The key to a great day is gratitude for all you have.  Gratitude for family, food, fellowship and fun.  Gratitude for the laughter that peeks in and out of your days.  Gratitude for one more day.

We aren't football fans, really, but we like the Superbowl.  This year it was just Hubby, Babygirl and I (apparently we simply forgot to plan a party LOL).  We randomly decided to cheer for the 49ers and were rewarded with something to scream about at the end.  We laughed like loons at the commercials and ate KFC for dinner.  Our team lost and we simply didn't care.  We sympathized heavily with the coaches' parents.  No one had a tougher day than they did!

My goal for our second transplant year is to try to find something to cheer about every day.  It's not hard to find such things, it's just sometimes harder to NOTICE them. 

Movies with friends - YAY!!!!!!  Headache-free - YAY!!!!! 

New kidney survived to the critical one-year mark - YAY!!!!!!!!!

DeeDee 

Week Ninety-two - A Year of Grief....

One year ago today Jorge's family was saying a long, difficult good-bye.  One year ago this morning we received our "Drop everything and DRIVE" phone call.  At least five other families got the same call.  Lord willing, all six of our families are celebrating the amazing milestone of one-year transplant survival today and tomorrow (for us, it is technically tomorrow, since Babygirl's surgery ran overnight and she actually received her transplant on the 4th). 

But for Jorge's family this cannot be a day of celebration.  My heart absolutely aches for them.  A good friend of mine just passed the one-year date of the death of her baby boy.  As amazingly strong as she is, it was a week of intense suffering layered onto a year of agony.  Watching her grief mix with her unmistakable determination to honor the life of her little boy has given me a clear window into the heart of grief - the kind of grief every parent dreads.  The kind we have been blessed to keep at bay now for the ninety-two weeks since Babygirl's diagnosis.  The kind of grief we know can lie ahead without warning for any parent, and especially for those of us who raise children with fragile health.

Jorge's family has been heavily in my thoughts and prayers all week.  I thank God for them, for the difficult choices they made when they realized his death was inevitable.  Pray God I am strong enough (if, God forbid, I must ever make such choices) that I would do the same. 

Bless them, Lord.  Hold them tight in the palm of Your hand.  Grant them peace and rest, as we know you already given to Jorge.

DeeDee