April 28, 2010

New deck!

And because we can't get enough of these two sitting at the picnic
table together. Today Ben insisted on sitting next to Olivia instead
of across.

April 27, 2010

Dr. Ben

Baxter Corp was kind enough to send us a free "medical play" Teddy bear complete with an IV kit. Ben has been going to town on poor Iggi bear who has now had two IV lines and about a dozen shots.

Out of the blue and I swear with no prompting from me he asked, "Is his tummy broken?"


I said, "What do you think?"

He replied, "Yeah." and then asked, "WHY is his tummy broken?"

(((Good question.)))

I just said, "I don't know."

Being an almost-3-year-old, Ben did not find that answer to be sufficient.  So I used the classic back-up reply, "Ask your dad."

Heh heh heh!

April 25, 2010

The truth - no, it's not over, done or fixed

There are certain things people say to us about our sonWe know they are honest and well-meaning and we have the same thoughts.  But, they are statements and questions so loaded that they are nearly impossible to respond to honestly in the moment.  Here is my stab at the honest responses...

"Oh, I thought all of that was over."

What I usually say:  Yeah.

The truth:  Uhm, no.  These are birth defects.  They're not going away.  They'll never be over.  When we first started connecting with other VACTERL parents we were told, "The first few years are the hardest."  And, yes, I think we are over that.  (***knock on wood***)  Those first few years were a seemingly endless list of new problems being discovered, tests galore, insurmountable surgeries, appointment after appointment after appointment, round-the-clock medications, ritualistic routines with medical supplies, etc.  These things aren't over; they've just changed and gotten spaced out a lot more and that has been really nice.  But no, no over.

"I thought he was done."

What I usually say:  Yeah.

The truth:  Nope.  His issues are chronic.  They will never be done.  They will always be there and will always need to be monitored or corrected.  He will always have appointments and tests to monitor things.  We are "done" with our list of major surgeries that we knew he would need from birth.  That doesn't mean he might not need surgery in the future.  In fact, he might need several surgeries depending on how things progress.  And he might not.  But, he is not done and never will be.

"Isn't everything fixed?"

What I usually say:  Yeah.

The truth:  No.  Actually, he has more problems left un-fixed than fixed at this point.  Everything urgent and critical has been "fixed" now...that we know of anyway.  That's a good feeling.  The latter part isn't such a good feeling and since it hasn't gone away yet I figure that's just going to be the little annoying voice we will live with for forever.

"But he's okay now, right?"

What I usually say:  Yeah.

The truth:  Yes.  And no.  And maybe.  He has birth defects and chronic health issues go along with them.  He is "okay" in that he is happy and developing normally on all fronts.  He is "okay" in the sense that he is stable health-wise; not in crisis.  But his issues aren't exactly the fix-it-and-forget-it stuff we had been led to believe by the well-meaning nurses and doctors helping us through those first few terrifying weeks. 

"Does he REALLY need this?  Aren't you overreacting?"

What I usually say:  Yeah.

The truth:  I know some people think we are being overly-concerned, hyper-paranoid, or are "looking for problems."  And they are right.  Hey, if it weren't for our paranoia...

Ughhhhhh...do you really want me to go there?  Fine.  It is our paranoia that got his tethered cord diagnosed.  A neurosurgeon told us he was fine.  No problems.  Go home and enjoy life and don't worry about it any more.  We didn't.  Why?  Instinct maybe.  Paranoia definitely.  We pursued a second opinion...and a third...and a fourth...and we even harassed a semi-retired expert in this field for a fifth opinion.  Our paranoia, instincts, and whatever even convinced us to subject him to another trip through the operating room for an exploratory procedure and another sedated MRI.  Guess what?  WE WERE RIGHT.  His spinal cord was indeed tethered and being stretched, nerves were being damaged and were affecting how his body works, it caused a cyst to grow inside his spinal cord and he needed neurosurgery to stop it all from getting worse.  And it could have gotten so much worse.  Unspeakably worse.

So, as you can see our prior "overreactions" have ended up being justified in a major way.  We are so hoping our current and future "overreactions" aren't justified at all!  We would love nothing more than for us to always have a reputation for being overly-concerned, hyper-paranoid, and "looking for problems."  That is much preferred to being seen as justifiably-concerned, hyper-paranoid for a good reason, and "always finding problems."

"He'll be fine."

What I usually say:  Yeah.

The truth:  Yes.  Of course.  We hope.  Most likely.  Our deepest, darkest, most terrifying fear is that this next procedure, test, sedation, surgery, whatever will be the one that makes him not fine.  The chances are more than in his favor...it's the fact that it's a chance that makes it so gut-wrenching.  

So...when you say these things and you see us take a breath, shrug, pause for an uncomfortably long time, look down at the floor, search for words, and fidget you now know why.  It's not simple.  And we have no way to adequately and honestly respond with anything but, "yeah." 

April 20, 2010


We've had a chilly spell lately, but here is a photo from our last
nice day.

April 19, 2010

Cincinnati Bound...yes, again.

Yep, you read that right.  We are making plans to head off to Cincinnati Children's Hospital yet again.  Apparently we can't help jinxing ourselves because every time we leave that place, as we are driving away, one of us knuckleheads says, "Hey, this could be the last time we ever leave this place."

Will we ever learn?!  Hopefully this time...

For a change of scenery, we will be seeing a new doctor there in a new department - Dr. Alam in urology.  We have been uneasy for a while with several aspects of the current urological care Ben is receiving...mostly just worried that we aren't being proactive enough.  The biggest concern is his kidneys as we have heard time and again that "kidney damage is silent" and not uncommon in kids with his issues.  We have decided to consult the urology team in Cincinnati because they have the highest number of cases with Ben's issues being treated at their hospital, so their experience with his particular condition is unparalleled. 

I spoke with a nurse on Cincinnati's urology team and went over Ben's entire medical history.  She was concerned with several aspects of his current medical care...most were concerns we share (delay of some tests, length of space between appointments, lack of concern on the part of our doctors over those weird blood labs, etc) and some of her concerns were new and a surprise to us.  She said he should have another test to check for kidney reflux...we didn't know kidney reflux was something that could develop later - he had the VCUG test as a newborn and it showed no reflux and we thought that was the end of the story, but it looks like we were wrong.  She also expressed concern regarding those weird blood labs he had last year and said they would consider his bicarb levels "significantly low"...and this is scary because the bicarb level is an indication of kidney failure.


What is a little frustrating about this - well, beyond the obvious - is that we're experiencing an about-face of attitude between our local specialists versus the Cincinnati specialists.  Our local doctors have been great, but the general attitude has been one where I feel like they're indulging my overly-concerned mommitude.  I had the opposite attitude from Cincinnati - it was more like "Uhmmm, hello mom?  Why aren't you more worried about this?!"

Although I certainly don't like having my own fears being echoed by medical professionals, it FEELS better to have them on the same worried wavelength. What the Cincinnati team feels Ben needs is a full urological work-up.  We expected that.  Doctors tend to like to have tests done on their own equipment by their own colleagues.

All the fun begins on May 18th with a trip to the operating room.  Yes, you read that right...operating room.  It's nothing huge, just a little exploratory adventure and catheter placement.  Still...operating room...bleh.  General anesthesia...bleh.  Consent forms...bleh.  Monitors...bleh.  Handing him over to strangers...bleh. 

The next day, May 19th, will be a battery of tests including x-rays, blood work, and ultrasound.  The nurse explained there is a relatively new blood test which can more accurately detect kidney problems.  Then in the afternoon we finally meet with the urologist to find out what it all means.

The possible outcomes of all this testing vary from status quo to the most extreme.  Perhaps, if we are super lucky, things will look good and we will happily continue with our same routine of yearly appointments just to check in and make sure things are a-o-k.  Or, if things don't look so good, we might leave with a new, round-the-clock routine that pretty much changes our lives.  And if things really don't look good we will be faced with a very complicated, lengthy operation.  If things really, really don't look good I suppose we will be looking for local dialysis centers and getting tested as possible kidney donors. 

Okay, I'll admit the last bit was a tad dramatic.  

In reality we have every reason to believe these tests will not only look good, but look better than the last ones he had done.  After all, he had his tethered cord release surgery so his spinal nerves aren't being torn apart any more.  Yay for us for getting that one taken care of, huh?  And, more importantly, this is SuperBen we are talking about here...the kid who "may never walk or worse" who is right now jumping off of the coffee table...the boy living with something around a dozen different birth defects (yes, we've lost track) and you'd never know it to look at him...yeah, he is going to be fine.

Still, we are preparing ourselves for the possibilities so that we can be informed and strong if we need to be.  And we are trying to figure out how to prepare Ben.