Blown Away

We finally returned home this afternoon after three weeks on the road seeking care for Jackson's Progressive Infantile Scoliosis.  Seriously ... in the last 17 days, we have only spent 5 at home.

This was yet another obstacle that we never expected to face.

Around 8/14-8/15, as you know, we traveled to Shriner's Hospital in Philadelphia for Jackson's 6th Mehta casting ... only to have another horrific experience.  That cast was improperly applied and had to be removed within 12 hours of its application.  At that time, we chose to transfer Jackson's care to the Shriner's Hospital in Greenville, SC for safety reasons.  

The following week we traveled to Greenville, SC to establish Jackson as a patient and hopeful that he could be casted while we were there -- it is an 8 hour trip, each way.  Unfortunately, they were unable to fit Jackson into the OR schedule.  However, shortly after leaving, we received a phone call that they had found a slot for him on 8/28.  So, we hit the road after only 36 hours at home ... headed back South toward Greenville for Jackson's 6th casting ... or, re-casting.  It's amazing ... Jackson has worn 5 Mehta casts, but has been casted 8 times (thanks to Philly's negligence).

With a lump in my throat, I tried to stay positive and start afresh with Shriner's Greenville.  On 8/27, Jackson has his pre-op evaluation.  Again, every single nurse we met was professional and kind.

We spent Jackson's last night out-of-cast at the mall, riding the escalator up-and-down ... something a 2 year old thoroughly enjoys!

The next morning, it was time for Jackson's surgical procedure.  It didn't take a lot of effort for my optimism to prevail.  WE WERE SO INCREDIBLY IMPRESSED WITH EVERY ASPECT OF SHRINER'S GREENVILLE.  It is astounding to me how VERY, VERY, VERY different Philadelphia and Greenville run their hospitals.

The PACU was beautiful, private, and child-friendly.  There were lovely murals on the walls and nice "sky" lights.  Our nurse, Bobbi, was gentle and made us feel right at home.  She coordinates each child's stretcher bed sheets to suit the child.  Jackson's sheets had little dogs and firetrucks on them.  In the PACU, Jackson also got to choose a brand new toy off of the prize wagon.  He chose a REALLY nice Tonka firetruck which provided a great distraction while we spoke with the multiple doctors and completed all the necessary paperwork.

Jackson's new doctor, Dr. Stasikelis, once again AMAZED us with his adherence to Dr. Min Mehta's ideals for treating PIS.  He uses a different type of undershirt that is extremely tight to allow proper fit of the cast.  He also cuts the front cast hole exactly like Dr. Mehta's design.  And, most importantly, he constructs his casts 100% from plaster of paris.  This is something that I originally questioned in Philadelphia when Jackson's cast was made of fiberglass.  All of the research I had done stated that PLASTER should be used to get a proper mold on the torso.  I was so pleased to find that Dr. Stasikelis casts using only plaster.  I cannot tell you how much more confidence I have knowing that our new doctor was trained BY DR. MEHTA HERSELF and is FOLLOWING her proven principles instead of altering them to his liking.

After Jackson cast was applied, he was given a private room on the inpatient floor to recover and dry.  Again, we were BLOWN AWAY!  Dr. Stasikelis has his casting procedure down to a fine-tuned science.  Each PIS child follows a series of steps on casting days ... and it was p.e.r.f.e.c.t.!  Every step flowed efficiently and smoothly.  Also, it was so much less stressful on Justin and I because we were given assistance with caring for Jackson's needs and preparing his cast.

Step One:

initial recovery from anesthesia -- this is done with a PACU nurse (without parents)

Step Two:

parents speak with Dr. Stasikelis in his office to discuss how the procedure went in the OR and future plans

Step Three:

family (including NeNe and Oliver) meet Jackson in his hospital room

Step Four:

child is positioned with the cast dryers in order to "set" the plaster

(plaster casts are initially more pliable and must be dried ... but this flexibility also allows them to be corrected if needed and molded to properly fit each child ... awesome?  I think so!)

Step Five:

child is taken to the "cast room" where the nicest ladies in the world fully moleskin the cast FOR THE FAMILY (we used to have to do this ourselves) at lightening speed and flare the cast in any tight areas for comfort (if Philly had done this ... we probably could have avoided the removal of casts #3 and #6 ... if the cast had also been 100% plaster)

Step Six:

child returns to the hospital room for final touches, IV removal (Jackson's least favorite part ... an understatement), and discharge

Step Seven:

family is ESCORTED TO THEIR VEHICLE by a wonderful nurse to ensure child can comfortably sit in his carseat ... WOW!

Jackson getting his cast dried:

Cast dryer:

Having a snack:

The bain of Jackson's existence -- his blasted pulse ox monitor.  HAHA!  He kept saying "hurt, hurt" and trying to get us to remove it.  I know for an absolute fact that this monitor does NOT hurt, so I had to chuckle a few times at the drama.  In this photo you can see the 100% PLASTER OF PARIS cast ... how it should be constructed!

The cast room:

(clean and child-friendly)

Justin and I preparing Jackson's cast with his Sponge Bob duck tape.  He fondly refers to this cast as his "Bob cast."

Ta-Da!

Once Jackson's cast was fully prepared, he got to open his Build-A-Bear that Shriner's Greenville PROVIDED!!!  Each surgical patient receives their very own Build-A-Bear ... then gets to choose a brand new outfit for their bear each time they return to the hospital!

Mommy might have liked the Build-A-Bear even more than Jackson liked it.  It warmed my heart to see my baby being treated kindly and like a child.  This is the way a children's hospital SHOULD BE!

When we initially went into Jackson's hospital room, there was also a balloon, new blankie, and special little socks waiting for him.  The big firetruck you see is the one he chose in the PACU before surgery.

Where are we?

This was so incredible!  

Not just the generous gifts ... but the pleasant, loving attitudes of all those around us ... the eager volunteers surrounding us to answer questions, give directions, and make us comfortable ... the professionalism of the ENTIRE staff (from cafeteria cashier to chief-of-staff) ... the emphasis on safety and the comfort of our child ... and the strict adherence to Dr. Mehta's principles for serial plaster casting!

WE WERE JUST BLOWN AWAY!

I know I keep saying that ... but we were!

Before he was discharged, Jackson also enjoyed pet therapy with the most adorable little dogs you could ever imagine.

Oliver waited patiently until it was time for Jackson's discharge.

Then, he turned over his spot in the red wagon ... and we were escorted to our car.

***

The next morning ... we returned to Shriner's Greenville for a few final adjustments on Jackson's cast.  During the night, he said a small area on his back was hurting.  BUT ... BECAUSE HIS CAST WAS PLASTER ... that could be FIXED!

Look at that beautiful casting room!

(these murals are everywhere)

And that happy boy!

Soon ... we were on our way home!  Or ... at least to Roanoke for a pit stop.

What an extraordinary ... and extraordinarily different ... experience Jackson's 6th re-casting at Shriner's Greenville was for our family!  Sure, it's never all sunshine and roses (there was lots of crying ... just no  pictures of it) to have a child with a serious medical condition ... but it certainly helps to receive care in a warm and competent place.  I think ... just maybe ... I can wash my hands of Shriner's Philadelphia for good!

You know, I had lots of plans to write letters to the Shriner's about the poor care we received in Philadelphia ... and to push for another incident report to be filed for the improper 6th casting (some friends and family members have even encouraged me to attempt to sue).  

However, I have decided to spend my energy in another way.  Rather than spew the negatives ... I'm going to articulate the positives.  The countless positives of Shriner's Greenville.  I think I'm going to channel all of my energy into a glowing letter of thanks and recognition for their incredible care!

Did I mention that we were BLOWN AWAY?!?

Shriner's Philly Jokes

SOOOO many times on our journey with Progressive Infantile Scoliosis, we have found that we were faced with the decision to either laugh or cry.  And, as cliche as it sounds, laughter really is the BEST medicine.

My husband, Justin, was blessed with the gift of humor ... and so much so lately that I feel inclined to share with you a few tidbits from our last journey to Shriner's Hospital.

I'll call them, Shriner's Philly Jokes:

On our way home today, just randomly:

Justin:  "Can you imagine if Philly was scheduling our next appointment when it gets close to our vacation (in December)?"

Me:  "What?  Why?"

Justin (using a Philly voice):  "We have the dates of December 2-9 available."

Justin (talking back to himself):  "Umm ... that doesn't work for us at all ... we will be out of town the whole time."

Justin (Philly voice):  "Well, unfortunately ... Dr. Cahill will be on vacation the three weeks prior AND the three weeks after December 2-9th.  Looks like we can cast him again on February 2nd."

Justin (talking back to himself):  "That's soooo long out of a cast!"

Justin (Philly voice):  "Consider it his Winter Solstice casting break! .... Because, unfortunately, Dr. Cahill is on vacation from February 3rd until December 31, 2012."

***

Justin:  "I wish I was Dr. Cahill's travel agent!  That guy must make TONS of money!"

***

Me:  "Don't you feel less dread now that we aren't going to Shriner's Philly anymore?  I do!"

Justin:  "Yes!  Since transferring away from Shriner's Philly, I feel 20% less suicidal!" (joking)

***

Justin:  "Dr. Cahill, that cast looks WAY TOO TIGHT ON JACKSON!"

Justin (Philly voice):  "He'll be okay ... I got GREAT correction ... that's right ... from this guy!"

Justin:  "But Dr. Cahill, he's turning blue!"

Justin (Philly voice):  "He'll be okay.  This guy got great correction!"

Justin:  "But Dr. Cahill, he might die!"

Justin (Philly voice):  "That's okay ... this guy got great correction!"

HAHAHA!

Maybe you had to be there!

:)

Let It Be

"Let It Be" by The Beatles kept playing over and over in my head ... And I heard it everywhere too.  It rang through the radio in Roanoke antique stores, and it played as the "on hold" track at a doctor's office I telephoned. 

When I find myself in times of trouble, Mother Mary comes to me ...

Speaking words of wisdom, let it be ...

And in my hour of darkness she is standing right in front of me ...

Speaking words of wisdom, let it be ...

I hummed along. 

Days after returning from another horrific experience at Shriner's Philadelphia, we loaded up our minivan for the 8 hour trip to Greenville, SC for Jackson's consult with his new orthopedic surgeon.  We stopped in Roanoke and spent the first night there to break up the long road trip with the boys. It was a comforting place to be in such an uncomfortable time.  

Neither Justin nor I knew what to expect when we arrived at the Shriner's Hospital in Greenville on Wednesday morning.  It has been SUCH a long time since I have used the words "good" and "Shriner's" in the same sentence, so brace yourself:  our total experience at Shriner's Greenville was good. Actually, we were blown away, and I was moved to tears several times. 

First, Shriner's Greenville is in a nice town, not an inner-city slum. For the first time, we felt safe visiting the hospital. The Shriner's Greenville also looked like a REAL hospital rather than a third world country clinic. It was clean, child oriented, and the equipment looked current and organized.  Most importantly, it was populated by kind professionals who made us feel welcome. We were greeted by volunteers who gave us a small tour, and spoke nicely to Jackson.  And, being a Southerner, there was a healthy dose of "honeys, sweeties, and darlins" that made me feel relaxed and at home.  

The lobby was complete with a small waterfall and wildlife display. And upon being escorted to his exam room, Jackson was given goldfish crackers, juice, and his choice of a DVD to watch as we waited for the doctor.

Here's the Shriner's Greenville, SC lobby:

A far cry from this exam room we were placed in in Philadelphia last week:

(yes, those are dirty linens on the stretcher)

Jackson got another X-ray of his spine, we told our story to a gentle PA who we really liked, and soon we met Jackson's new doctor: Peter Stasikelis. We were instantly pleased. Jackson's COBB was measured between 15-18 degrees and his RVAD (rib slant) was measured at 4 degrees. Dr. Pete told us that, although promises are never made, he thinks Jackson's Progressive Infantile Scoloiosis still shows a high potential to be CURED with a continuation of serial plaster Mehta casting. He did inform us, however, that he likes to continue casting until the spinal curvature measures 0 degrees. That translates to many more travels to SC for our family, and many more months of wearing a torso cast for Jax. However, it also translates to a doctor who is committed to preserving the integrity of Dr. Min Mehta's life work on curing PIS with slow and gentle early correction. It means I will no longer have to push Jackson's medical team to provide him with proper treatment.  Hopefully, they will provide it naturally.

Dr. Stasikelis inspired us with a new wind of confidence. He used Dr. Mehta's name multiple times in his discussion with us about casting. He also ensured us that his casts will look somewhat different than Jackson's previous 5 casts because he more closely follows the true Mehta-style casting.  I suspect Jackson may be soon facing another adjustment period in his next cast.  He also instructed us on an exercise to do with Jackson that we have never before been shown. It stretches his curve. Dr. Stasikelis also mentioned God twice during Jackson's exam. That too was inspiring.

The only moment of dispair during this Shriner's visit came at time to schedule Jackson's next cast. The doctor was unable to squeeze Jax into his OR schedule for the following day because he was overbooked. The next available casting date was 9/20. I left this hospital feeling sick to my stomach about Jackson being out of his cast for a total of 6 weeks.  I am so afraid of losing ground with Jackson's scoliosis correction.  Being a "cast family" is difficult at times.  Although Jackson has adapted so well to life in his cast, we still have to be extraordinarily careful about keeping the cast dry and keeping Jackson free of illnesses because he cannot fully expand his lungs.  

However, the next morning while I was drying my hair in our hotel room, the telephone rang. There had been a cancellation for 8/28 and Jackson had been moved onto the OR schedule for next Tuesday.

So with joy and thankfulness in our hearts, we headed back to Roanoke to rest for the night before driving home just long enough to pack for our next trip to South Carolina.

***

Adding to our happiness was the fact that our road trip to Greenville take us close to Justin's dad who lives in Georgia. Our trips home also bring us past Justin's Mammaw's home in Chilhowie, Va. George drove up to Greenville to have dinner with us and to meet little Oliver for the first time.

Look at that b.e.a.u.t.i.f.u.l. Carolina countryside just outside the BBQ restaurant where we ate dinner.

Again, quite different from our view in Philly:

Then, we stopped by Mammaw's for some wonderful country cooking and visiting with family.  I just love seeing lovely Mammaw with her great grandsons!

My heart is finally feeling a bit of rest. I am exhausted, but not heartsick for the very first time ever on this long journey with Progressive Infantile Scoliosis. I am working on forgetting our terrible experiences at Shriner's Philadelphia, and I am optimistic about our new team at Shriner's Greenville. I feel encouraged that we made the right decision to transfer Jackson's care, and I hope that he continues to experience healing there. Mostly, I am learning to "let it be."

Please keep us in your prayers.

***

Look who discovered his footsies on this little adventure:

He is very proud of himself ... just like Mommy and Daddy!

Stay Tuned ...

More casting "adventures" less than one week away!

Published

I cannot tell you how many times I have written this blog post, then chosen not to publish it.  And I’ve played it over and over in my mind many more times than that.

You see, having a child with any sort of “special need” can be, and oftentimes is, a very lonely place.  I am thankful every single day that Jackson’s Progressive Infantile Scoliosis is a “special need” that allows him to live a fairly normal life.  We are blessed beyond measure that it has treatment, is generally not a death sentence, and doesn’t affect his mental faculties.

That doesn’t mean it is easy.

That doesn’t mean we don’t need support.

Justin is my “rock” when it comes to these emotions I’m finally expressing publically.  He hears them all the time.  His philosophy is “if you don’t have any expectations of others, then you won’t have to be disappointed when they don’t come through.”  He’s 100% right.  But … I’m a woman … a mother …. a tiger mama …. and I don’t think that way.

I am disappointed, angry, often flabbergasted, and mostly hurt.

When our family experiences weeks like the last one … and the upcoming one … I feel so alone.  I feel like, certainly, no one cares about what we are going through.  Because if they did care … they would call me, email me, text me, send something nice for Jackson, or make us a meal.  Generally speaking, none of this ever happens.

And … I’m going to let you in on a little secret … while I totally understand that this is meant as a nice gesture:  “Let me know if I can do anything” is a meaningless statement to anyone in crisis (not just special needs families).  In blunt honesty, we are too exhausted to ASK you for favors … and, albeit, probably too proud.  Actions speak infinitely louder than words.

To outsiders looking in, maybe Jackson’s condition is “just scoliosis” because they don’t understand.  Trust me, I blame a lot of things on ignorance or else I’d never be happy.  But, let me tell you … PIS is quite a different beast.  Every 8-10 weeks for the last year, our baby has been x-rayed, drugged, intubated, poked and prodded, and bound up in a 3lb plaster body cast.  Can you imagine having surgery every 2 months?  That’s not even considering the amount of traveling we do, the expenses we incur, and the stresses of constant phone calls, faxes, and doctors visits.  And then there’s the mistakes … the many costly, painful mistakes that Shriner’s Hospital has made on Jackson.  And we cannot even see the light at the end of the tunnel yet.

Sometimes I wonder if people just don’t know what to say, so they don’t say anything at all?  Or, going through something this monumental is so foreign to most people, that they cannot understand its toll?  Either way, it hurts to feel so forgotten.  I often reflect on my life before we were touched by a “medical condition.”  I wonder, wholeheartedly, if I would be the same way if it wasn’t happening to me and to someone else’s child.  Somehow, I don’t think so.  I think I would remember.

To the choir members out there … all the “special needs” mamas reading this blog … thanks for all the times you’ve SAID IT BEST on your blogs when I couldn’t speak.  I sincerely hope that you’re out there in cyberspace nodding away with me like I have so many times with you.  GGGGrrrrr ….  Thank you also for being the ones … who between programming medical devices, filling prescriptions, traveling across the country, and wearing your many hats … find the time to check on us.  We appreciate it more than you know (or maybe not, because you do know).

Visiting UVa

The purple shadows of the Lawn are cast a bit differently when you're traveling with two little ones ...

Particularly when your two-year-old is just having "one of those days."

It was bittersweet visiting the Grounds of the University of Virginia (where I attended college) yesterday with the boys.

I certainly felt older ...

And, although not immersed in my studies, wiser ...

And even a little reminiscent of days gone by ...

I was keenly aware of how the college years really are "the best years of your life" in some ways.  I miss them.  I miss having my best friends in the world all living minutes away.  I miss sleeping past noon on the weekends ... and choosing to stay up 'til all hours.  I miss my hott little body.  (just saying') I miss my relative lack of responsibility.

However, these times are good too.  Satisfying.  Another "best years of my life," I think.  And, when Jackson wasn't having a meltdown in the University Bookstore ... or on The Lawn ... or on The Corner ... it was a good day.  

:)

Visiting UVa with my kids was a certainly different experience, but it was nevertheless wonderful.

And I'm glad they got to be there with me.

Unbelievable ... Cast #6

Sometimes, I toy with the idea of stopping writing this blog for the honest fear that my readers are going to begin thinking I am making up the stories from my imagination.

So, let me first tell you that the most recent tidal wave that has struck our family in Jackson's treatment for Progressive Infantile Scoliosis is real.  No animation, CGI, or special effects here!  This is black-and-white ... fact-not-fiction ... bone fide truth telling.

And, it's unbelievable.

As you know, we traveled back to Shriner's Hospital in Philadelphia this week for Jackson's casting procedure.  I had previously shared with you that we were at a crossroads in his treatment plan with the possibility of him moving into a removable plastic brace or being casted a 6th time.  Well,  Jackson's standing, out-of-cast x-ray revealed a COBB angle (curve) of 19 degrees and an RVAD (rib slant) of 8 degrees.  This meant more casting ... and probably more than one more cast.  Justin and I were a little discouraged by this "set back."  However, we remained encouraged by Jackson's low RVAD ... showing a propensity for his scoliosis curve to continue to decrease.

We began his procedure already a bit upset with Shriner's Philadelphia for scheduling him at 1:30pm.  That meant that Jackson (who is only 2 years old) could not eat between midnight the night before and 5-6pm when we were discharged from the hospital.  I'd like to see the staff members entertain a two-year-old ALL DAY LONG in a hospital without any food or drink.  Ahem.

Nevertheless, we proceeded to the OR when it was Jackson's turn for casting.

We all (including baby Oliver) waited patiently for his return.

Everything seemed to be going "as well as can be expected" when Jackson returned to the PACU and Justin and I began preparing his newest cast with moleskin and duck tape.  Jackson was tearful upon waking, but once the effects of anesthesia began to wear off ... he perked up to almost his cheerful self.

(if there is every a "couple's body cast covering contest" ... EVERYONE BETTER WATCH OUT!!!)

(we are totally headed for Olympic Gold)

We were happy to discover that in Jackson's 6th Mehta cast, his scoliosis curve was being held OVER-corrected by one degree!

However, our happiness quickly turned to concern JUST before we were discharged from the hospital. When we stood Jackson up, we noticed that his bladder/bowel area was bulging beneath his cast much like it did after his 3rd cast when he had to horrifically undergo casting twice in one day.  You might remember reading that post on here as well.

This is what it looked like:

We also noticed that his cast did not look like it was perched on his hips correctly.  Bringing this to his nurse's attention, Jackson's doctor returned to the PACU to take a look.  He agreed, couldn't explain why Jackson's bladder was bulging, and suggested further trimming the belly hole of the cast and "waiting to see" if Jackson experienced any problems.  We VERY reluctantly agreed, and left the hospital sick to our stomachs.

At first, things looked like they were going to be all right.  Then, this morning, Jackson began periodically crying and saying "back hurts, back hurts."  Soon, that fussing turned to hysterical crying.

WE HAD HAD IT!!!

THE CAMEL'S BACK HAD BROKEN!!!

THAT WAS IT!!!

With they help of Heather, the Founder of the Infantile Scoliosis Outreach Program (ISOP), I put on my "case manager" hat and began frantically navigating the medical system.  Hey ... who says I'm not still using my nursing skills as a homemaker?!?

I got Jackson scheduled for the first available appointment at the Shriner's Hospital in Greenville, South Carolina and immediately telephoned Shriner's Philadelphia to demand his 6th cast be removed.

Jackson screamed all the way into the city ... and I cried along with him.

We got to Shriner's Philly after a grueling car trip in terrible traffic, and began plowing through the red tape to get his cast taken off.

When the resident began to remove the cast, we all noticed that the cast was soaking wet.

THE.  ENTIRE.  CAST.

You know ... the cast that I try so desperately to keep bone dry for the 8-10 weeks between castings.

Again, like the countless other mistakes made, no one could explain this to me.  

Jackson's cast was removed, and we requested that another cast NOT be applied.  One look at Jackson's skin and it was OBVIOUS that we made the right decision.  After only 12 hours in his cast, Jackson already had the tale-tale signs of skin breakdown beginning.

We informed Shiner's Philadelphia that we would be transferring Jackson's care elsewhere.

Again, we are at a crossroads in Jackson's Mehta casting journey.  It is not the "happy new chapter" we were hoping for.  It is, however, a new beginning.

We have gradually and profoundly lost of trust in Shriner's Philadelphia, but we still whole heartedly believe in Dr. Min Mehta's serial plaster casting Early Treatment method for correcting Progressive Infantile Scoliosis.

The doctor we will be seeing in Greenville comes highly recommended, and we remain cautiously hopefully.  It is difficult to say that we are not discouraged.  In fact, we are VERY discouraged.  We are devastated that Jackson underwent yet another faulty cast for no reason whatsoever.  We are nervous that Jackson is currently without a cast altogether as we await our consult in Greenville ... and then await OR availability.  We recognize that this monumental decision may mean the loss of precious degrees of correction.  However, we made this difficult decision with Jackson's safety and wellbeing at the forefront of our minds.

In the end, we are confident that this will be "good."

Again, we stand at a crossroads.

Again, we are exhausted and tearful.

Again, we ask for your prayers.

Specifically, we ask for your prayers that this change of hospitals will prove to be the very best possible decision.  We ask for your prayers that Jackson will have a spot on the Greenville OR schedule ASAP so that he can get his next cast!

We ask for your prayers that Jackson will be healed.  

"Consider what God has done: Who can straighten what he has made crooked?"

Ecclesiastes 7:13