Adventures with Superkid

If you've recently stumbled upon my blog, you might have come for some of the sewing or craft ideas I've been posting (my goodness, I'm getting full of myself, aren't I?).  It's only been in the last few months that I've had the time, energy, or inclination to do that kind of stuff, and it is fun to share that on my blog.  My blog actually began as an extension of the CarePages I was keeping for my two daughters, Superkid and Lily.  (If you want to know about CarePages, click here.)  Today's post is an update on Superkid and some of her ongoing health challenges.....so no crafts today!  (But I did make that twirly skirt she's wearing.)

Some of you are aware that Superkid was born with a heart defect called mitral valve stenosis.  Her own mitral valve only worked for about a year, by that time it was causing severe enough heart failure that it had to be replaced by an prosthetic (artificial) valve during open heart surgery.  Superkid's new valve puts her at risk for blood clots, so she takes a blood-thinning medication called Coumadin.  (You can read more about that here.)  The other tricky thing about prosthetic valves is that they don't grow.  Superkid's prosthetic valve has to be replaced as her heart outgrows it.  She received her second valve in December, 2008.  It looks like this:

As if that weren't enough of a challenge for one little person, Superkid has had to deal with several others, as well.  

Her heart failure was severe enough prior to her first surgery that she had to have a feeding tube that went directly into her intestines.  We used this at the time of her initial heart surgery to help provide her with additional nutrition and calories that she didn't have the energy to ingest by mouth, both pre and post op.  We used it for several months after surgery to help her get extra calories she needed to catch up.  We also used it for a couple of years following surgery to administer her heart meds, until she could handle taking them by mouth.  All that remains of her feeding tube now is a small, closed hole on her tummy, which Superkid refers to as "my other belly button."  Up until last year, Superkid was followed by a gastroenterologist for issues related to the feeding tube and what was thought to be reflux.  (Turns out what everyone thought was reflux was actually discomfort that seems to stem from pressure changes in her heart and fluid issues.)

A few months after her first heart surgery, we started to notice that Superkid's eyes didn't always track together.  This was diagnosed as an eye-muscle disorder called intermittent exotropia.  Corrective lenses helped a little bit, but the only permanent solution for this problem is--you guessed it--surgery.  Taking a blood thinner makes even the most minor surgeries very complex, so Superkid's eye surgery in June of 2009 put us in the hospital for a good two weeks--longer than her open heart surgery six months prior.  To give you some perspective, the eye surgery that she had is normally an outpatient procedure.  We continue to see a pediatric opthamologist to monitor Superkid's eye muscles and vision.

And then there are the migraines.  Superkid gets migraines.  Severe headache can be a sign of a blood clot or hemmorrhage in the brain--two things that Superkid is at risk for.  She's had a litany of tests (from CT scans to sleep studies) with the conclusion being that Superkid gets migraines for no obvious reason.  They are awful for here, but fortunately they don't last more than four hours (so far).  We are getting better at determining what triggers them: chocolate, excessive juice, sugar, late nights, etc.  She only gets them in the morning, so at least they are predictable that way.  So, we started to work with a neurologist on those.  

Pneumonia is another issue.  If Sariah gets a cold, it more than likely turns into pneumonia.  I've become pretty reliable at knowing when the pneumonia is starting: sometimes I can catch it before there is even much indication of it in a chest x-ray.  She's never had to be hospitalized for pneumonia, although it has sent us to the ER a couple of times.  Anitibiotics and breathing treatments always clear it right up.  It's just that she gets it sooooo often: three times between the first day of school and the first of December, this last year.  This year, her pediatrician turned us over to a pulmonologist.  Everything that was easy to diagnose was ruled out: her pneumonia isn't caused by heart failure, lung damage, asthma, or any obvious immune disorders.  Our pediatric pulmonologist, at a loss for any easy explanation, is sending us on to a pediatric allergist, to see if undiagnosed allergies could be the cause of her frequent pneumonia.

In case you are having trouble keeping track of everyone, here is a list of all the medical specialties we've covered, so far:

Cardiology

Cardiothoracic Surgery

Pulmonology

Neurology

Gastroenterology

Allergy

Opthamology

Infectious Disease (did I mention that Superkid is MRSA positive?)

Nutrition (went with the feeding issues early on)

Anesthesiology

Radiology (for all our xrays and assorted other procedures)

and we're about to add

Psychology

and Child Development

because Superkid just isn't picking up reading the way I hoped she would.  The motivation and desire are there,  but Superkid's frustration is increasing exponentially as we near the end of kindergarten.  When she asked me one day, after a particularly difficult reading homework assignment, "Do the letters jump around on the page for every reader, or just me?" I could tell that it was time to get some extra help.  I've read about studies that show children who have been on heart/lung bypass have an increased rate of learning disorders, so we're going to have some educational testing done.  Whether or not they make a diagnosis, I'm hopeful that through the testing we'll get some tips for helping Superkid learn to read in a way that works for her and her unique learning style.

The other specialty that follows Superkid is 

genetics and metabolism.  

Ever since Superkids was little, and we were dealing with new diagnoses of eye muscles and reflux, I've been asking our doctors, "Is there something else going on?"  I was always told that this was typical for heart kids; many children with CHDs have accompanying other issues that most doctors blame on their hearts.  After all, inadequate blood flow or poor nutrition due to heart failure can cause so many other things to go wrong.  

When our daughter Lily was alive, she had a lot of feeding and digestive issues.  A very bright, caring third year resident was determined to find a way to improve Lily's digestion, so she called on the metabolic expert at our children's hospital, Dr. Brian Hainline, MD, PhD.  He special interests are Inborn metabolism errors, molecular genetics of fatty acid metabolism.   I've been told that Dr. Hainline is one of only about five experts in this particular area of medicine within the United States.  Don't ask me what any of that means; I already feel like I have to get a degree in Chemistry just to be able to converse with him.  Since our first meeting with Dr. Hainline, I've decided that he is one of the most caring, engaged physicians we've ever encountered--in his own, unique way.  Dr. Hainline was able to answer a lot of the questions that we had about Lily.  The answers weren't easy to get, but the knowledge made us better able to care for and comfort her during the remainder of her time with us.  

Dr. Hainline also told me that he'd like to meet Superkid.  He was the first doctor to agree with me that Superkid's various medical issues might not be heart related.  In fact, he believes that many of the children who have CHDs and accompanying health issues aren't necessarily correctly diagnosed: he believes many of them have overriding syndromes that caused their CHDs and the other problems, rather than blaming the CHD for everything.  The problem with this radical concept is that science has yet to discover most of those syndromes.  Dr. Hainline had been able to determine that Lily had some type of metabolic disorder but had not been able to pinpoint which one prior to her death.  He has been working with Superkid to discover if many of her health issues are a result of a metabolic or neuro/muscular disorder.  

We don't have any answers, yet.  Initial tests have been inconclusive.  After our last appointment with him, in December, Dr. Hainline said that he'd like to review how Superkid handled the winter.  Would she miss a lot of school?  (20 absences and 6 tardies, so far, due to illness.)  Would she continue to have pneumonia and migraines? (Yes.)  Would she have a growth spurt?  (Not a spurt, exactly.)  How would she do at school?  (Not as well as we hoped.)  These are the things he'll be reviewing as Dr. Hainline considers our next course of action.  And this will take some considering.  If Dr. Hainline feels that additional testing is needed to make a concrete diagnosis, that testing could get pretty invasive.  We're talking muscle biopsy in a patient on blood thinners.  Not fun.  Painful.  And it is doubtful whether or not an official diagnosis would be helpful.  Treatment for many metabolic disorders is somewhat behind the scientific community's ability to diagnose them.  It's a relatively new field of study.

So, that's where we're at: between a rock and a hard place.

It brings our list of specialists we've met up to 14.  Looking on the bright side, Superkid hasn't had to be treated by anyone in 

Dermatology

Endocrinology

Oncology

Nephrology

Orthopedics

Otolaryngology

Plastic Surgery

Rheumatology

or Urology.

Am I the only one who is disturbed that our list of specialists we've met is longer than our list of specialists we haven't met?  I'm afraid that I've reached a level of experience at which I am obligated to go back and get a nursing degree.  Seriously.

Well, if you've read this far, it's probably only because you are related to me or because you can relate due to your own ongoing medical challenges.  I have to tell you that the reason Superkid continues to consider all her doctor's appointments to be social calls and the reason I'm not yet completely insane is because we have such an amazing children's medical center.  It is staffed by some of the most caring, sensitive, all-around nice doctors, nurses, techs, and staff.  Yes, we've met a few people along the way who didn't make our list of faves, but they've been few and far between.  As homesick as I get for the mountains, I don't know how I'll ever be able to leave these wonderful people who have given our entire family such stellar care.  If anyone reading this needs a recommendation for any of the specialists we've seen and lives in the Midwest (or is motivated to travel to get care from one of them) feel free to leave a comment with your email address.

Love: Bucketfuls

Buckets can be a mom's best friend.

I like to keep a couple of clean buckets on hand.

Buckets are very useful when I have a child (or two) with the stomach flu.  Skip this next part if you aren't a mom or do not care to read about gross stuff.  I make the person with stomach flu carry the bucket around everywhere they go.  If they want to sleep comfortably in their bed--as opposed to curled up on the bathroom floor next to the toilet--they can, and the bucket is a handy nearby receptacle.  If it needs to be dumped out, I just flush it down the toilet, rinse it in the tub, and spray all things mentioned down with bleach spray.  Very easy.  Children seem to be able to vomit into a bucket with better aim than they can a toilet.  Trust me on this one.

You probably do the same thing at your house....so this is old news.  But I'm telling you about it anyway because every so often I come across a fellow mom who wasn't taught about buckets.  

There's only one reason I would gross you out like this today.  

We are on Day Three of the Yucky Stomach Flu (what a lyrical statement!) at our house.

It hit Superkid hard and fast on Monday, and she's still not 100% better.  Or even 75%.  

Stomach flu causes some havoc with coumadin and INR levels.  So does everything else in the world, but stomach flu is particularly hard on the INR.  Probably because it messes with electrolytes and metabolism.  Darn germs.

 

One down, four to go.  You know it is only a matter of time before the rest of us have it.

I'm guessing that it will hit me today, because I have a huge list of things to do.

1.  Go to the church and decorate the gym for tonight's Cub Scout Blue and Gold Banquet.

2.  Go to the store and buy cake mix and other assorted items I need to fulfill other assignments for the Blue and Gold Banquet.

3.  Make 5 dozen blue and gold cupcakes.

4.  Frost 5 dozen blue and gold cupcakes.

5.  Organize games for the Blue and Gold Banquet.

6.  Take children to piano lessons and basketball practice.

7.  Get my family to the Blue and Gold Banquet on time.

8.  Do the stuff I'm supposed to do at the Blue and Gold Banquet.

9.  Climb my mountain of laundry, put a flag on top, and try to finish washing it.

10.  Wait until midnight to have stomach flu.

By the way, did I mention that I'm the new Cub Scout den leader?  (I'm stoked about it, seriously.  I think Cub Scouts are awesome, and I'm so excited to plan activities.)

It is going to be a crazy day.  Wish me luck!

Bionic Man: Handyman Extraordinaire

Did I mention that my husband is a Handyman Extraordinaire?

Did I?  Because if I didn't, I need to be forthright about the fact that he is.  And my life would be totally different if he was not.  Actually, I don't even know if "handyman" is really the appropriate terminology for what he is.  Master craftsman may be a better fit. 

Whatever you want to call him, I cannot deny the simple reality that Bionic Man can figure out how to make anything.  Literally, anything.  I'm not boasting or bragging when I say this, although I am quite pleased with myself for choosing such a talented man to be my husband.  No, when it comes to his handy-manliness, I'm just telling it like it is. It is almost scary, how good he is. 

Well, it is scary, if you are one of the trick or treaters that visits our house on Halloween.  But that is a post unto itself. 

Let me give you the basics.  Bionic Man is an engineer at work, an artist at heart, and a genius at home improvement. 

Bionic Man is blessed with a very creative mind, which he uses during the work day to be an aerospace engineer.  But Bionic Man doesn't exactly relish the fact that in order to do this job, he must be stuck in front of a computer all day, inside a drab cubicle, within a boring office building.  He likes adventure, excitement, the great outdoors, and a lot of creative license.  Bionic Man posesses that pioneering, let's-put-a-man-on-the-moon-and-I-volunteer-to-be-the-man spirit and really should have been born two centuries ago, when he could have settled a new territory using the farm implements he invented. 

But if that had happened, then we wouldn't be married today.  Unless I was born two centuries earlier.  That probably wouldn't have worked in my favor, because if I had been born two centuries earlier, I would be buck-toothed and blind.  And if I were lucky enough to get married, I would have died in childbirth for sure.  Wow, so much to be thankful for!

Anyway, when Bionic Man decides he is going to make something, he does.  Case in point: our backyard playscape.  I present to you....Exhibit A.

If you were to take a walk along the neighborhood trail, this is what you would see.  Our backyard, complete with the recently (and finally) finishished playscape. 

I say finally because Bionic Man began this project soon after we purchased our home, four years ago.  We had promised the children a playscape when we moved from our old home.  (Where the backyard was a hill perfect for sledding, but not for playscapes.)  After shopping for playscapes, Bionic Man informed me that purchasing a playscape was a complete waste of our money and his imaginiation.  He declared that he could build a bigger, better, playscape than anything we'd seen, and he'd do it for a fraction of the cost. 

Thus ensued the backyard project comparable only to Michaelangelo's Sistine Chapel.  Complete with scaffolding.

Like all good artists, Bionic Man didn't create his masterpiece without some practice.  First, he built the picnic table pictured here.

Finding that to be fairly simple and having aquired the appropriate power tools and expertise, he moved onto the actual playscape.  The design took some time, probably because I wanted a part in the design.  It took compromise.  Bionic Man listened to my design suggestions, threw most of them out, took a few several steps further, and decided to build the playscape in such a way that it could be conerted to a gazebo if the children ever stopped playing on it.

Can you see it?  That is the main reason our backyard playscape is topped by a cupola.  The cupola alone gives it more architectural detail than our actual house.  Are you starting to sense why I refer to my husband as the Bionic Man?  The cupola and cedar shakes are the reason that Bionic Man insisted the playscape wasn't "done" two years ago, after installing the slides.  He just finished the roof a few days ago.

Luckily, the deck was already a part of our backyard when the project started, or the project would have taken an additional four years.  Bionic Man does beautiful work, but having a "real" job on the side kind of cuts into his project time.   The above picture and the one below show the bridge that Bionic Man built to connect playscape to deck.  Pretty awesome, if I do say so myself.

And now for a few views of the slides.

The wavy slide, in particular, makes a very fun waterslide in the summer.  The bigger you are, the faster you fly!

Since Superkid takes coumadin to prevent blood clots, we have to be very careful about bumps and bruises.  Bionic Man was mindful of this when he designed the Sistine Chapel of Playscapes.  Note how the playscape has many levels, instead of ladders or small steps.

The climbing wall is one exception to that.  But he padded the area beneath it with lots and lots of mulch.  And Superkid has to use the rope. 

Birds love our playscape as much as our children do.  Maybe even more, since the children haven't mentioned anything about wanting to raise their young beneath the eaves of the playscape.  It is definitely watertight.

In the early days of the creation of this Seventh Wonder of the Backyard World, our next door neighbor peered over his fence as Bionic Man poured the cement for the footings. He watched quietly for a few minutes, then said, "Man, next time we have a tornado, I'm going to come hang onto your playscape. That thing isn't going anywhere."

It better not go anywhere.  Because, although the playscape ended up being bigger and better than any playscape we saw during our initial shopping trips, I'm pretty sure it wasn't a fraction of the cost. 

I'll have to share some more of the Bionic Man's projects another time.  Are you wondering yet what it is he does for Halloween?

Update:  Bionic Man has recently been working on the installation of a sandbox underneath the playscape.  The sandbox includes a pump and drainage system, so the kids can play with water in the sandbox, which will be drained, filtered and returned to the pump system.  Can you believe it?  I'll post more pics as soon as the landscaping around the sandbox is complete.

I'm linking this to Centsational Girl's Outdoor Ideas Party.

A Call from the School Nurse, cont'd

Okay, so after a full night of sleep (Hunter Puppy didn't wake up even once! He slept through the night!) let me return to the School Nurse story. Where were we? I told all about coumadin, and how crazy things were with the school....okay: basically, things being as they were before school started, they wouldn't even let me meet with the kindergarten teacher before the first day of school. B and I were able to meet with the principal and school nurse the week before school started. I put a lot of effort into making and illustrated handout that detailed all of S's medical issues, explained coumadin and the risk of accidents, went over emergency protocol, and provided every phone number I could. Wheew! I even brought them a stack of red towels to use for nosebleeds or other issues of blood. When B and I met with the school nurse and principal, our goal was to basically scare their socks off so that they would be committed to providing S with adequate supervision. It must have worked, because shortly after our meeting the school board approved the hiring of an additional kindergarten teacher.

But I was still nervous, sending S off to school that first day. I have worked so hard these last few years to keep her healthy and safe and help her to reach her full potential. It was terrifying thinking that a push on the playground could potentially erase all we've achieved in the past five years. So I prayed hard, mustered faith and hope, and put S on the bus that first day. (Then I jumped in my van and raced to the school so I could be there when she got off the bus!)

She looked so small getting off the bus! But she was SO EXCITED to be going to school, "just like E and J." How could I deny her that experience?

Obviously, I couldn't. But that didn't stop me from jumping every single time the phone rang for the first two weeks of school. Then I started to breathe more easily. Yesterday, when the phone rang, I was actually surprised to see the school identified on caller I.D. It was the school nurse. S was having a nosebleed. (My heart jumped up in my throat. S's nosebleeds can be really, really awful.) But it seemed to be stopping. (Really? Already? Yay!) And S had found her red towel herself and let her teacher know she was bleeding. (Good for S!) She should be able to return to class in just a few moments. (Easy as that? No way!)

And that was that. Anti-climatic, eh? Hope it stays that way!

Warning: Excessive Posting Occurring In this Jurisdiction

Yes, I admit it: two posts in a day is a tad excessive. Especially since I went, um, nine months between my first and second posts. But I'm enjoying this! (Hard to tell, right?)

Still haven't figured out the picture downloading stuff, and I don't dare try without supervision of technical wonderboy, B. It drives him nuts that I can't remember how to do this stuff after he shows me once. Good thing I'm around to keep him humble.

Anyway, after my two paragraph non-introduction to this post, let me tell you what I was going to tell you. (Drumroll please.....) I had my first call from the school nurse this year. About S.

Perhaps more explanation is necessary for anyone reading this who doesn't know us well. S's heart functions because of a prosthetic mitral valve that was implanted when she was a baby. (Actually, she's on her second prosthetic valve, the first was replaced last December.) The prosthetic valve functions because S takes a blood thinning medication, coumadin, that prevents blood clots from forming around it. Our blood is designed to clot around foreign objects, but in the case of a heart valve, you don't want a clot to form. So coumadin helps make S's blood extra thin. It also makes our lives very interesting.

Coumadin is notoriously hard to regulate. Many, many factors can change the way it works in the body. So we do regular blood work--usually at home, with our own machine--and I've learned to do the dosing depending on her numbers. S's numbers are all over, mainly because coumadin wasn't designed for children. But it is our only option, so we deal.

Coumadin can also be dangerous. When your blood isn't supposed to clot around an artificial heart valve, it doesn't do such a good job of clotting anyplace else, either. People who take coumadin are at an increased risk for bruising, bleeding, and (worst case) hemorrhage. This means that small injuries could have really, really bad outcomes if we are not completely on the ball. A bump to the head, for instance, could result in brain hemorrhage. Bloody noses can last, literally, for hours. Routine outpatient surgeries turn into multiple week hospitalizations. And minor accidents can cause bruising like this:

That is a picture of S, a week after she pulled a chair over that bumped her in--obviously--the eye. You probably wouldn't believe me if I told you that this occurred in the month of January, and in April of that same year my sis-in-law had to do some creative photoshopping to the SAME bruise so it wouldn't join us in the family portrait.

Above bruise was particularly nasty. We have been very, very blessed that our very active and fearless S has not had many other accidents like that one.

So, back to the school nurse. Imagine what it was like to face sending S to kindergarten this fall. I had been dreading the start of public school for well over two years. I was a little freaked about preschool, last year, but I had lots of confidence in the preschool I picked. The teachers were absolutely wonderful, and she only had eight children in her class. But kindergarten was a different story. Also a longer story. For the sake of brevity, let me just provide you with the barest details: principal resigned shortly before school started, school board thought they might save money by not hiring a replacement, decided to cut a kindergarten class, S was going to be in a class of 27 originally, board rethought previous decisions under pressure and hired a new principal and additional kindergarten teacher two days before school started!!!!!

Hey, I just looked at the clock. It is time to shut down the computer and have some Quality Time with my favorite (and only!) husband. This entry will be continued.......