Thursday, March 29, 2012

Week Forty-nine - Struggling to Keep Up.....

Babygirl is only able to attend school four days per week because of her doctors' appointments.  She arrived back at school behind.  She is getting more behind.  She's very motivated, and sits and does homework for more than an hour some nights, but she's always, always a few steps behind.  The school won't give her an extra hour of home teaching each week to make up the lost day, so she is going to her teachers at lunchtime every single day for extra help. 

I'm frankly more discouraged about it than she is - she's just glad to be back in the game.  But I wonder how she'll manage in the long run.  She missed the vast majority of her music elective and that subject was not covered by home teaching.  She's on limited gym, so she has writing assignments when she can't do the physical stuff.  She's supposed to do a mile run next week, and she knows she's too out of shape to manage it, so she's spending some extra time trying to build up her physical endurance. 

I can't protect her from failure.   And I feel I'm  failing her somehow by not finding a way to make it easier.  I want...I don't know what I want... I just want to wrap her up in cotton wool and keep her safe.

Too late. That beast called NotFair already got her.


Monday, March 26, 2012

Coping With the Side Effects......

Babygirl has been most fortunate when it comes to handling all the various meds she's had to deal with over the past year.  The phosphate binder didn't bind her.  No problems with iron, vitamins, and hormone adjusters.  The new anti-rejection protocol doesn't make her hands tremble, cause nausea, make her hair fall out, or any of the other potentially far more dire side effects (so far).

Except the prednisone.

It's a life-saving drug, I know.  But its short-term side effects can be miserable.  When Curlygirl needed it to treat her asthma, we referred to it as "Demon Possession in a Bottle."  Usually by about the third day she would start throwing food at the table, and once or twice I think I saw her head spin.  When I was on it in 2010, it caused mood swings and hot flashes that made menopause seem like STABLE time period in my life.  You can ask any of my children, and they'll tell you that I was NOT stable during menopause LOL.  The drugs long term side effects can be disastrous.  Cataracts, obesity, diabetes, osteoporosis, thin skin - it's a long and ugly list.

Babygirl is going to be on prednisone for the rest of her life, although at much lower doses than she started on.  She has been fortunate in that the drug does not make her moody, although it does make her hyperactive.  The cataracts, diabetes and osteoporosis we have to keep observing for.

But she has the weight gain.

When Babygirl was diagnosed she weighed about 103 pound, if I recall correctly.  Her "dry weight," the weight after dialysis, was around 98 pounds.  During her time on dialysis she grew only 1/2 inch. 

Since the surgery February 3rd, she has grown another 1/2 inch, gained a shoe size, and put on nearly 30 pounds.  The first ten pounds were absolutely needed to catch up from a year of being ill.  Another 2 match the height gain.  The rest is settling on her belly and face, and since she is a normal American adolescent girl, she is becoming unhappy about this. Her BMI (Body Mass Index, a ratio of height to weight adjusted for age) has risen from below the 25th percentile to above the 75th percentile - not obese, but a huge jump.

Her legs are also swollen.  The accounts for a little bit of the weight, and is a combined side effect of the prednisone and amlodipine, which she takes for high blood pressure (oh, that one can cause swollen gums, too!).  This makes her feet hurt at the end of the day, especially while walking back and forth to school .  We could, of course, drive her one or both ways, but then she'd lose her main source of exercise, which would then add to the other problems.

We spent part of Saturday shopping for new clothes and shoes.  It was not a fun time.  Aside from the "I'm fat."  "I can't believe I need a shirt this size." and "Mom, look how swollen my legs are!", she got very tired long before we found every thing we needed.

She's in Philly with her dad seeing the doctors now.  It will be interesting to see whether restarting school with its attendant increase in activity will have had any impact on these problems.  She continues to decrease the amount of prednisone she takes, and that will (hopefully) also help.

I raised one child with an eating disorder.  I'm altogether too aware of the kinds of comments that trigger food avoidance, and we are starting to hear them from well-meaning people.  "Wow!  You've really put on some weight!" is really never, ever okay to say to ANYONE.  No one I know would even consider saying such a thing to an adult, so why, may I ask, do people think it's okay to say to a KID?  Especially a 12 year old girl?


Wednesday, March 21, 2012

Week Forty-eight - Recovering on Schedule.....

I am perpetually amazed by how well Babygirl does overall.  She knows her meds.  She takes them without protest.  She follows her diet.  She is as active as her quarantine allows.  She recovers!

Yesterday she returned to school.  I expected that she'd be very tired.  I drove her in, but she walked home (a bit less than a mile).  She had to re-enter classes, figure out what new special class that she's supposed to be in (it was music when she left, who knows now).  She had to deal with crowds after weeks of family.

I had a hard time getting her to go to bed.  She has WAY too much energy for a sick kid LOL.


Tuesday, March 20, 2012

Let's Study........

Yesterday morning we had the usual visit. Doctor, social worker, nurse, nurse practitioners - and the research study person-of-the-week. On at least half of our visits so far we have been invited to participate in research studies, all of which have been specifically designed for kids who have had transplants.

The first one was a simple questionnaire about our family's smoking habits. They were amassing information about how secondhand smoke impacts chronic kidney disease.

The second is to be a long-term (15 month) compliance study where Babygirl will be enrolled in a medication education coaching program. We agreed last week to enter the study, but this week discovered that she can't enroll until she's at least three months post-transplant, so we have to wait a few weeks on that. She was a bit disappointed - that one comes with a (minimal) gift card stipend.

The third we enrolled in yesterday. It was also a questionnaire-type study, this one aimed at determining barriers to compliance with meds. The study leader asked Babygirl to name all her meds (which she was almost completely able to do), and to tell her what each was for (again, almost complete success - we just need to work on the name of that blood pressure med!). The study leader then asked about medication side effects, both specific to tacrolimus (her main anti-rejection med), and general to all her meds. I got to do a questionnaire about MY barriers to the meds (cost, refill issues and so on) and one on how I perceive that Babygirl is doing with her meds. She got to complain about the weight she's gained because of the prednisone. In 9 - 12 months they will repeat these. It'll be interesting to see if our answers change.

It's interesting to me that we have not been asked to evaluate a new or experimental medication.  I think I understand why - who on earth would permit someone to give their precious child an unproven therapy?  And who would risk putting their child in the placebo group?  Perhaps those studies will be offered to us if she experiences rejection, or an intolerable side effect to one of the existing meds.

In the meanwhile, I'm encouraging her to participate in whatever they offer.  I'm trying to teach her how science works, and why it matters for the next kid who gets a transplant for them to collect as much data as possible from HER.  In a way, it's going to become her random act of kindness each time she agrees to do a study, however silly or mundane it appears from our perspective. 

And hey, if they toss her a gift card, so much the better!


Monday, March 19, 2012

Kindness is Apparently Contagious......

This week's trip to Philadelphia was interesting.  We had a safe journey, but if you have a moment, say a prayer for the family whose SUV was in flames on the Northeast Extension near Lansdale yesterday.....

Before I left, I sat down to see how much (if any!) money I had free for the journey.  My gas tank was full, which is enough to get us there and a bit more than halfway back.  I had $13 in my wallet, a gift VISA with $9 on it that I've been using to pay for parking, and about $20 in checking, with no real emergency backup.  Ulp....

But I've been holding onto a Sunoco gas gift card that the social worker at our OTHER hospital gave us last August after our fun-filled (NOT) stay for Babygirl's first surgery.  So, thinking it was good for $25, I slid it into my wallet.  I figured it would get us home from the halfway rest area where we usually stop.

We got to the hospital, registered, and went for blood work.  We then hit the cafeteria so Babygirl can eat with her morning meds. Despite the tight funds this morning, I borrowed an idea from the 366 Random Acts of Kindness blog ( and passed along my buy-ten-get-the-next-free coffee card for the CHOP Coffee Shop. 

The man in front of me at the coffee station had that quietly desperate look of exhaustion that I have seen in my own mirror more than a few times this past year.  I asked how his child was doing, and he basically said it was too soon to tell.  His 2 month old had started having seizures, a clearly terrifying thing for any parent.  I told him I'd pray for his baby and handed him the free coffee card and some information I'd learned about support during our stay.  So pass a prayer or two THAT way, too, okay?

Babygirl and I walked a mile to the prosthesis shop (and a lovely day it was for a walk!) to get her new kidney guard.  The staff there was wonderful, and even used her favorite color (red, of course!) to adorn the strap that will hold it in place.  Then we go to do some paperwork:  Medicare will not pay for this device, and they are submitting the $490 (OMG ARE YOU KIDDING FOR A PIECE OF PLASTIC WITH ELASTIC AND RED VELCRO????) bill to our private insurance.  Oh, yippee.  This is an out-of-network service, since no one here in our town makes custom kidney guards for children.  I'm thinking that entire bill will be in my mailbox within a month.

So.  We drove home.  At the halfway stop, I was down to about 2 gallons in the tank, and pulled out the gift card.  We went in, got coffee, and the cashier actually recognized us.  "You come in here all the time, don't you?"  "Twice a week.  Babygirl had a kidney transplant 6 weeks ago.  Can I use this gift card at the pump?"  "No, you need to bring it in here.  Actually, just give it to me - what are you driving?  I'll enter it into whatever pump you use. How much is on it?"  "$25.  Thanks!"

I drove to the pump, she waved from the window, and as I was pumping, she came on the speaker: "Don't leave - I'll be right out!"

She came out, handed me a computer printout that showed that the card still had a balance of $25, and said, "It must have been for $50!  I didn't want you to leave without the balance." 

I thanked her, took the card, put the cap back on and got in the car.  As I was putting the card back into my wallet, I looked carefully at it.  On the back of the card was printed "$25." 

She bought my gas. 



Friday, March 16, 2012

Week Forty-seven - Travel is Tiring......

Since Babygirl had her transplant in a center that is a 380 mile round-trip from home, and since for the first six weeks they require twice-weekly follow-up, we've racked up a few miles.  For the last two weeks we did one follow-up per week "locally," meaning only 150 miles round-trip. Since the end of January that makes almost 3,400 medical miles.

Starting this Monday we will be down to weekly trips, probably every other one to CHOP, and the other "local."  That will certainly make things easier, but our medical travel distance over the next six weeks will add up to 1,600 miles.  We will likely never travel less than  monthly. 

It's already routine.  Going to Philly, we stop as little as possible, and bring snacks from home to keep the cost down. We travel on Sunday, see the team on Monday, and return home that day, so we have to stop somewhere for food and fuel, and usually we buy a morning snack for her to take her meds with after they take her blood. We listen to music, her iPod or mine, and on one lucky Sunday happened upon the Prairie Home Companion's Annual Joke Show!  Babygirl frequently naps away some of the travel time.  And we have the added blessing of staying with family near Philly.

The trips are costly.  With gas, tolls, and food it's $100 round trip to Philly, which added up to $400 in one pay period.  I feel like I am always at a gas station somewhere.

But it IS fatiguing.  The miles pile up on our car and on our bodies, and on our hearts.  We knew we were in for this, and I'm not at all ungrateful for how well Babygirl feels now! But I feel like I have no right to complain.  It's a bit like complaining about the challenges of parenting when you have adopted a kid.  People sort of look at you funny and say things like, "Well, you ASKED for it!" (As if biological parents parent involuntarily?)  We KNEW that if we accepted a transplant out of town that there would be a lot of travel. And we did it because we knew it was the best place to go for the care that Babygirl needed, and still needs.

On one recent trip, Rhonda the Honda hit a pothole and the entire electrical system failed for a moment.  At the next bump, it all came back on, and Hubby made it home without further incident (she died later that day when I was driving her locally and needed a new starter, and whatever thingydoodle the starter hooks into).  God has been very, very good to us as far as road safety is concerned; and we have had almost no bad weather - a miracle in the northeast in February.

We went to Philly a day early last weekend, arriving at dinnertime on Saturday instead of Sunday.  I joined my sister-in-law for a Pub Crawl with her friends, something I have never done before.  I had a good time, a nice walk, a few drinks, and a lot of laughs.  I slept like a rock, and my first thought upon awakening on Sunday morning was, "Oh, thank God, I can have a NAP today."  Yeah, I'm tired LOL.


Wednesday, March 14, 2012

Babies Are Entertaining.....

Curlygirl's little Squeaker is absolutely adorable.  He's the kind of baby who sighs, and then melts down against you, and squeaks while he sleeps.  But he has one additional talent.

He toots.  No, that's really an understatement.  He TOOTS.  The day after he was born, one of the nursery nurses was holding him when he let one fly.  It was so startlingly loud she nearly dropped him. 

The other day he tooted so loudly it woke him up.  It really, really scared him and he started to cry.  And that's when he learned EXACTLY what kind of family God gave him to.  Instead of receiving loving, maternal comfort for his fear, he nearly got shaken baby syndrome because Curlygirl could NOT stop laughing.  Nor could anyone else in the room. 

Poor Squeaker!  LOLOL.


Sunday, March 11, 2012

Taking Up An Old Battle......

When I was 48, my Babygirl was 6, and I was 100 lbs overweight. Since my mom had her first stroke at 58, I suddenly awoke to the idea that I had only TEN years to make a lasting change.

I did not 'go on a diet.' I radically changed my lifestyle. I lost 60 lbs, and went from being winded going up 2 flights of stairs to being able to ski for 6 hours with Babygirl (not that we got to do that THIS year!). I walk a mile a day at least, and go to Curves three days a week.  I eat five to seven servings of fruits and veggies each day.

Or I DID.  Then came kidney failure.  Stress.  Mandatory sedentariness (okay, no such word, but you get the idea).  We ate on the run a lot, and although I have figured out ways to minimize the caloric impact of fast food, it still adds up when it's a repetitive behavior.  I had trouble fitting the walk and work-outs in around the dialysis machine hookup times, and by the time we got the transplant, I had largely stopped doing either.

And as I said, the food at Children's Hospital is really good.  They had healthy options such as veggies and fruit readily available.  But they had some pretty good Philly Cheese Steak subs, and decent pizza.  I stayed clear of the pasta, burgers and big deli sandwiches.  I ate fruit and salads, and had a spinach omelet for breakfast and NOT the chocolate chip pancakes. I took all my pills daily.

Starting two days after Babygirl's transplant, I began regularly climbing the stairs in the CHOP atrium.  There are 48 steps to the third floor, and I did them three to five times daily.

But there was one other problem.  I forgot to pack one of my medications.  Since it's injectable, it lives in the fridge.  And it's got one major side effect - it decreases my appetite.  I found myself TWENTY pounds heavier by the middle of February than I was in mid-April, before Babygirl's diagnosis.

I knew before we left for CHOP that I was in trouble.  My 'skinny' jeans hadn't fit for a while already, and some of my work pants were getting tight.  By the time I came home I could barely button my 'comfy' jeans, and had only three pairs of pants that fit for work (thank goodness - my skirts are a bit more forgiving LOL).

For the first few weeks since the transplant we have been getting into the medication routine, since the meds HAVE to be taken every 12 hours without fail.  And gradually, I have been getting back on track with the meds and healthy eating.  I began walking daily again about ten days ago.  The dog is looking slimmer, and I've lost ten pounds.  My 'comfy' jeans are getting comfy again, and I'll see when I get home from this trip to Philly if any more of my work pants fit again.

Because the bottom line remains.  I'm an OLD mom for Babygirl.  Most women raising 12-year-olds are in their thirties, and I'll be 54 this month. She's chronically ill and is going to need support for a long time.  And she's going to be dependent on ME for health insurance.  If I work until she's 26 (beyond which time she won't be covered by my insurance), I'll be 68 when I can retire (holy CRAP that's only 14 years from now!!).  Medicare will cover her for the next three years, since she had the transplant.  If she goes on dialysis again, they'll cover her again, with a three month delay (more in another post on the ramifications of THAT).

Nothing I can do will guarantee longevity. Nothing I can do will guarantee that I will be able to work even if I'm alive.  But I will say this, again:  As much as it rests on me, I will do all I can to be here for Babygirl as long as I can.  I'll get my mammograms, my colonoscopies, my cholesterol and blood sugar tests.  I'll maintain the healthiest lifestyle I can without making myself and all those around me insane.  I'll do what my doctor tells me to do (and on my last visit his command was, "I want to see that extra weight GONE by the time you come back in three months!").

It's easier for me to take care of myself now that Babygirl looks so well.  I know I'm sleeping better without the dialysis machine alarms.  She'll be returning to school, God willing, in a little more than a week.  I need to take the time to breathe.


Thursday, March 8, 2012

Week Forty-six - Home Teaching....

Babygirl has been having teachers come to the house to catch her up on missed school.  What is wonderful about this is that her very own schoolteachers are coming instead of a district tutor.  This means that people who already know how she struggles are here to help and support her.  I get to eavesdrop some, and it's fascinating to see a real teacher at work. All of my girls have been through the same school, and have had these teachers.

You see, I try to help with homework.  I try to make it simple, explain things, and move slow.  But my mind just doesn't really work that way.  That's not to say I'm not an excellent teacher.  Medical students love me (most days LOL), and the schools who send them keep sending them.  But ask ANY of my daughters, from Citygirl on down, and they will ALL agree they'd pretty much rather die than have me work on long division with them.

I can't explain how it's different.  Maybe all parents have the same problem, although somehow I doubt it. But one-on-one with one of my kids?  Things somehow just get ugly.   I get impatient, they get stubborn, I get irritated, they get intimidated.... Arghhh.  So it's nice to see it done right!

I had one very funny moment getting this all set up.  Hubby and I both work now, and there is a rule that another adult be present when a teacher is at the house.   One of the teachers was telling me, "There has to be an adult in the house when we are there."  I responded, "Curlygirl will be there."  Teacher:  "But there has to be an ADULT in the house."  Me: "Curlygirl WILL be there."  Teacher:  "There HAS to be an ADULT there."  Oh, I'm slow!  Me: "Ummm...Curlygirl is eighteen."  Teacher: "OMG That is NOT POSSIBLE!"  "Yup.  And Citygirl is almost twenty-three."  Teacher:  "Lordy....."

Nothing makes a teacher feel like they are aging rapidly more that realizing that a former "kid" is now a grownup.


Saturday, March 3, 2012

Moving Smoothly from Crisis to Crisis.....

Not too long after I posted my last post, Curlygirl went into labor.  She and Squeaker's daddy toughed it out from 11:30 PM to 3 AM, came and got me and off we went to the hospital.  Water broke, labor proceeded.  And proceeded.  And so on. 

Meds.  Epidural. Patience.  But Curlygirl is tiny, and Squeaker just could not come down far enough to come out on his own, so off she and daddy went for a C-section. 

Squeaker, it turns out, weighs an astonishing 9 pounds, 13 ounces.  More than a few wits have noted that, with that kind of head start, he's likely to be bigger than his mom by age two!   

Up 'til now, you say, "What crisis?"

After the surgery Curlygirl went to the recovery room.  She was there for HOURS.  It seems they weren't happy with blood pressures in the 74/40 range, so they pushed nearly a gallon of fluid into her to get her pressure up to 100/58,  at which point they concluded that perhaps she has naturally low blood pressure. After all, she's only 18. 

But since then she really hasn't been able to get up and stay up.  Standing up causes chest pain and lightheadedness.  But it was fainting in the bathroom that REALLY got their attention!  I hear that if somebody pulls that little string in a hospital bathroom, LOTS of people show up.

So tonight, for the second time in less than a month, a total stranger, someone we'll never meet, saved my daughter's life.  The first time, it was a kidney donation for Babygirl.  The second time, a blood transfusion for Curlygirl.  She's still far too pale from my mommy perspective, but she's able to sit up without breaking into a cold sweat.

Thank you, whoever you are.


PS It hardly needs to be said that Squeaker is adorable.  He looks like a tiny, very chubby version of his mom!  He reminds me a bit of Choco.

Thursday, March 1, 2012

Week Forty-five - Staying on Top of It All......

We're home.  Hubby and I are back to work, and Babygirl has some home tutoring going on.  Curlygirl is still waiting for little Squeaker to arrive, and her older sister is finally back in her own flood-damage-repaired apartment. So things are settling down.  Sort of....

This morning I drove 40 miles round-trip through a snowstorm to see my doc, listening to school closing updates all the way.  I finally have permission from my doc, as of today, to return to 40 hours a week of work, but no extra hours.  That's great, and is an accurate reflection of my ongoing return to good health. But I'm sitting here trying to figure out how I'm going to squeeze 40 hours of work in around the medical needs of those I care for.

Babygirl and Hubby drove the 150 mile round-trip through that snowstorm to the local kidney center for blood work this morning.  The good news was, of course, that we didn't have to drive the 380 mile round-trip to CHOP in that same snowstorm.  The local trip can be finished by 11 AM.  The CHOP trip starts the night before and gets us home by about 3 PM.  We are currently looking at one CHOP (Monday AM appointment) trip and one local (Thursday AM lab draw) trip each per week.  Hubby and I are taking turns, so I'll be heading back to Philly on Sunday afternoon. 

My mom was supposed to see her doc yesterday.  If I had known, I'd have set it up for her, but despite the fact that they are supposed to have MY number listed as her home phone, I didn't get a a reminder call.  Since I was in Philly during her LAST appointment and didn't actually schedule this one myself, I had no way of knowing, so I have to somehow reschedule this, and I HAVE to go with her. 

Curlygirl has GOT to go into labor sometime!  Squeaker was due yesterday.  They may decide to induce tomorrow.  Guess what?  I'm going to be there.

I went to the pharmacy today, picked up am enormous bag of drugs and came home to sort them.  Then I discovered that we are one short and will run out of pills over the weekend.  Under the circumstances this is absolutely unacceptable, so I made a phone call to CHOP, leaving my cell number for contact.  Luckily for me I didn't leave the house yet - they returned the call on my HOME phone.  Ugh.

Speaking of pill sorting, I did that for my mom the other day.  It took nearly 2 hours, not counting the extra trip to Walmart for an emergency fill of a med that hadn't yet come from her mail-in pharmacy. I spent another hour paying her bills.  Then I came home and filled my pill sorters - that at least went smoothly.

When, exactly, am I supposed to fit in working??