Saturday, January 12, 2013

Mehta Casting #8; Overjoyed!

I am flooded with so many emotions all in this very instant.

I am overwhelmed with the realization that Jackson's Progressive Infantile Scoliosis is being CURED by serial plaster torso casting ... and that 10 years ago, his condition would have killed him.

I am speechless that had I not been a "type-A," tech-savvy, medically inclined (thank you nursing degree), albeit pushy mother ... Jackson would have already undergone countless painful, invasive, complicated, and dangerous rib rod-lengthening surgeries that would have left him to spend his toddler years in the PICU.

I am a little apprehensive and confused about Jackson's doctor's current treatment plan (explained below).

And ...

I am overjoyed with the news that Jackson's current, out-of-cast, standing x-ray reveals a COBB (curve) of 4 degrees ... and that is NO LONGER CONSIDERED SCOLIOSIS!!!

*   *   *

As you can tell, we just returned from another trip to Shriner's Hospital for Children in Greenville, South Carolina for Jackson's 8th Mehta casting procedure.  As usual, in full-incredible-Jackson fashion, my son was an absolute trooper.  He NEVER throws fits or protests the huge amount of rigmarole that goes along with a "casting day."  I think a lot of people, even those who know us well, think that when I say "Jackson is going for another cast" I mean a simple application of plaster on an exam table.  I figure they picture getting a cast applied for a simple broken arm.

Well, that is not the case ... Jackson is anesthetized and intubated in the operating room, pulled into total-body traction on the casting table, manipulated by the surgeon into a straight-spine position (this time, overcorrected and pushed to the opposite side of his curve), and wrapped 360 degrees in 4 pounds of plaster.  Then, he must recover, sit with the cast dryer, have his cast covered in moleskin and duck tape before he can be discharged.  It is a 5-6 hour process IF we are the FIRST case of the day!  All of this happens every 6-8 weeks ... and his favorite phrase through it all is: "thank you."

Because I haven't shown this before, just to help my readers visualize the casting table (and perhaps have insight into the complexity of the procedure), I want to include these stock photographs of the Mehta casting table and procedure.




Mommy:  "Jackson ... do you love you cast?"
Jax:  "Oh yes!!!"

Speechless.

*   *   *

Okay, enough of the heavy ... here are a few pictures from our last trip to Shriner's this week.

On Wednesday, Jackson had his pre-op examination in the clinic.  Dr. Stasikelis, taking childhood radiation exposure seriously, rarely x-rays his patients.  Even when I requested an x-ray, we has highly apprehensive.  However, after watching Jackson walk shirtless down the hallways, Dr. Stasikelis exclaimed "His back does look awfully good ... let's go ahead and get an x-ray today."

And ... you think the beaches of Thailand are beautiful?  Well, nothing compares to this beauty:


A curve of 4 degrees!!!

Medical texts will tell you that considering standing variances and reader-error, a spinal curvature of 4 degrees (less than 10) is NOT CONSIDERED SCOLIOSIS but a NORMAL VARIATION!!!

Seeing that little number literally brought tears to our eyes and immense warmth to our hearts.  We were on cloud nine!

For comparison, here is Jackson's final x-ray before beginning Mehta casting in September 2011 in Philadelphia (this x-ray was taken in July 2011 ... so, it was probably even worse).

(around 50 degrees)

And here is a comparison of Jackson's x-rays just since switching his care to Shriner's Greenville, SC.  He began there at 18 degrees and is now at 4 degrees (in only 2 casts)!


I'm telling you ... I could shout from the rooftops!!!

*   *   *

Early Thursday morning, we arrived at the hospital for Jackson's scheduled casting.  We are so thankful for our family and friends who were praying with us for an EARLY casting OR time slot.  Jackson was scheduled FIRST!

Soon, we were in the PACU and Jackson was getting ready for his surgery.  You know, no big deal to this guy!



Jackson was looking forward to choosing a toy off the toy-wagon ... and you can see in the photograph below that he scored a pretty awesome monster truck.  The strange shirt he has on provides a nice protective barrier for his skin so that he doesn't get covered in excess plaster.  Once his cast is applied in the OR, his doctor rips this shirt off from beneath the cast and Jackson is usually 100% clean (another nice touch compared to Philly).


While we waited for Jackson in the operating room, we had a little fun with Oliver and a fez.
What can I say?


Soon, Jackson returned to his hospital room for a bit of time with the cast dryer.  We told him he looked like E.T. when he was in Elliot's bike basket ... not that he understood the reference.  Ha!


He did not shed a SINGLE tear this time during recovery.  All he requested was television and juice.  What a hero.



After about 30 minutes, it was time to visit our FAVORITE nurse "Stephanie" in the "cast room" so that Jackson could get moleskin applied to the raw edges of his cast.


And Mommy and Daddy applied his duck tape!


We then returned to his hospital room for his I.V. removal (not fun) and discharge instructions.



Always time to pose for a family photo.


Just look at the extreme correction of Mehta cast #8!  What you are seeing below is Dr. Stasikelis attempt to "overcorrect" Jackson's spine.  Since his spine is currently considered "straight" ... the next few casts are used to both maintain this correction and to "overcorrect" the spine.  Essentially, Dr. Stasikelis is trying to create a small curve in the opposite direction of Jackson's actual scoliosis in the cast in order to further promote maintenance of the straightening and to create a little "wiggle room."  


*   *   *

This is where I'm a little concerned.  I can dictate to you the current treatment plan for Jackson.  However, I cannot explain it ... and I'm doing a lot of soul searching.  Everything I have ever read about Mehta casting for Progressive Infantile Scoliosis states that any curve under 10 degrees is considered CURED and no longer needs casting.  So, I was always under the impression that NOW would be the time Jackson would be molded for a removable plastic brace.  However, Jackson's doctor is aiming for a ZERO degree measurement.  He applied this cast on 1/10/13 ... and plans another cast in 6-8 weeks WITHOUT x-rays ... then in an additional 6-8 weeks after that cast ... he plans to get x-rays before Jackson's 10th Mehta casting procedure.  If his spine measures ZERO, he will be molded for a brace AFTER wearing his 10th cast.  However, if his doctor cannot get an ABSOLUTE ZERO he will continue with more casts.

I feel a little disheartened about this.  Foremost, I absolutely trust Dr. Stasikelis ... so it is very difficult for me to question his judgement.  At the same time, I seriously thought we would be DONE with casting if Jackson's spine measured below 10 degrees ... and, I also know how incredibly difficult it is going to be to obtain an ABSOLUTE ZERO x-ray from a 2-year-old.

Soon, I fear we will be at a crossroads of whether to continue casting beyond #10 ... or to say "we would like a trial period in a brace" against Dr. Stasikelis' advice.  Jackson does incredibly well in his cast; however, at that time, he will have spent more of his little life IN a cast that OUT of a cast.  Sometimes, that saddens me a bit.

For now, all I can do is research and pray.  I foremost trust the Lord, and I pray that He will reveal to me the BEST decision for my son.

Please join with me in both PRAISE and PRAYER.

The End.

6 comments:

NeNe said...

All I know is that God has big plans for Jackson...He is so amazing and the sweetest child I have ever known...He is lucky to have a Mother, that did all this research to find this wonderful treatment for him....Love you all...

Anonymous said...

I came across your blog while researching Infantile Scoliosis.
My 4 month old grandson's pediatrician requested an Xray January 18th after my daughter and I discovered a curve in his spine and a hump on his side. Childrens Healthcare called his pediatrician with the news, he has scoliosis with a 31 degree angle.
We had our first appointment with a local Pediatric Orthapedic Surgeon. He read the Xray as a 23 degree angle and wants to wait 3 months to see him again. Not acceptable!
I immediatley scheduled with Shriner's Childrens Hospital in Greenville, SC. He will be seeing Dr. Peter Stasikelis in two weeks.
I am SO glad you shared your story!
Jackson is a brave little boy!!!
God bless your family!

JenHeath said...

Dear Anonymous!

Your post just gave me chills!!! It means so very much to me to know that my blog is helping newly diagnosed children get the proper treatment. Dr. Stasikelis and Greenville Shriner's ARE INCREDIBLY! I don't think you will be disappointed. Please DO NOT hesitate to contact me personally at jaheath86@gmail.com if you have any questions/concerns/or just want to talk! I have many families who I talk with over email or even telephone quite often to help them along the way. Best wishes.

Jen

Kristy Cheatwood said...

Oh wow i just ran across your blog while doing a search online, I was just telling a friend of mine about this very nice couple i met at Shriners and how they use duct tape on their sons cast and was actually looking for some of the designs on the cast when up popped a pic of this handsome little boy who i knew looked familiar. By the way my name is Kristy and im Brennans mom ,we met yesterday ( March 21 )I think you guys are some of the best roommates we have had at Shriners and it was very nice meeting you. I hope your little guy is doing great and hopefully we'll meet again sometime at future appointments.
~ Kristy

JenHeath said...

Hi Kristy!

Thanks for posting! Jackson is doing well in cast #9! How is Brennan? I hope you find some cool duck tape for next time. Our next cast is 5/23 ... when is yours? I will try to find you on Facebook. My email is jaheath86@gmail.com if you ever want to chat. Take care!

Jen

Kristy Bunch said...

Hi Jen, Im just receiving your reply mssg my blogger / gmail doesnt like me lately. We actually had our pre-op on 5/3 and our #14 cast is 5/9 tomorrow morning 6am.
Unfortunatly Dr P was in Canada at the time of his pre-op so we didnt get that " out of cast " xray or a chance to discuss cast / brace options etc.. We were a bit disappointed but hopefully tomorrow we'll be able to talk everything over with Dr P and go from there.
Bren is doing great and we LOVE the duck tape he chose Spongebob for #13 and #14 he is asking for Spiderman.
I hope you and your family are doing great and all goes well at Jacksons #10. I am on facebook and your more than welcome to email anytime notblonde08@yahoo.com good news bad news or just to rant lol. ;-)