Friday, August 31, 2012

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."


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!


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?!?


melissa everson said...

This gives me chills. GOOD CHILLS!!! I'm so happy for you. Thank goodness Jackson is FINALLY in good hands. I can totally understand you want to focus your energy on the positives, but I'd totally sue Shriners in Philly! They are negligent to say the least. Good luck and God bless your family!

Josh said...


I noticed my son John's ribs were protruding from one side. Got an X-ray, 28 degree curve. We are from Georgia but living in Washington state now. I have been reading and searching as I am sure you can relate to. John is 11 months old. Do you have any recommended reading? Do you know of any resources related to who to go see for this issue. It appears from your writing that it is critical to get the right people.

JenHeath said...

Hi Josh!

I'm so glad you asked. First, you should be SO PROUD of yourself for seeking quick and appropriate for your son. With early onset scoliosis, time really is of the essence.

Yes! I do have some resources. I found about 95% of my RELIABLE information on this website:

From that website, click on "Resources" at the top ... and read the second link "Journal Bone & Joint article" pdf file. That is Dr. Min Mehta's research study that found a CURE for Progressive Infantile Scoliosis. There is also MUCH MORE valuable info all over that site.

I would also strongly, strongly, strongly recommend contacting Heather Hyatt-Montoya (she's the founder of the above mentioned site/group). She is the lady personally responsible for bringing Mehta casting to the USA. I talked to her right away when Jackson was diagnosed and she had held my hand ever since. I have her cell #, and I talk to her regularly. SHE DOES NOT MIND AT ALL!!! She has so many connections, resources, and is a wealthy of information.

If you live in Washington state, I believe the closest Shriner's Hospital to you is the one in Salt Lake City, Utah. I would strongly recommend seeking treatment at a Shriner's Hospital as they specialize in this condition and have the correct training and equipment to perform the casting. Heather can help you get connected with them. The Shriner's will assist you with transportation (even airfare) if you decide to go there. It is also 100% free of charge ... regardless of your income and/or insurance status. There is just a small application process which they will assist you with.

I would LOVE to chat with you further if you have more questions. My personal email is:

If you'd like to talk privately ... or even over the telephone ... feel free to contact me that way.



Jamie said...

Jen- Thank you so much for sharing with this blog. We just found out that our son has PIS. I feel like I understand medically what we will be going through in the future but it's a little harder to get a Mom's perspective (Seriously I got here by google-ing "haircut with Mehta casting" I am so thankful that you are sharing your life so that people like me can see what might/will/could happen during this treatment. Thanks...Keep up the good work! Jamie