Monday, June 4, 2012

Crossroads -- Casting #5

Ready, set, go!  Finally, I have a moment or two to sit down (maybe) at tell you about Jackson's 5th Mehta casting for the treatment of his Progressive Infantile Scoliosis.

This Friday, June 1st, 2012 at 9 a.m., Jax was scheduled for his procedure at Shriners' Hospital in Philadelphia, Pennsylvania.  Although we didn't have to arrive at the hospital until 7 a.m. for check-in, we still left our house at 2 a.m. in order to allow time to stop and feed baby Oliver.  As we pulled onto I-81, I looked over at Justin in the driver's seat and said "do you realize that two days before Jackson's first Mehta casting, we found out that I was pregnant with Oliver ... and, now we are traveling to Philly with him in the van?"  What a journey this has been!

Good morning, Philly!


We arrived at Shriners' right on schedule, and after a little while in the waiting room, Jackson was called into the pre-op area to prepare him for surgery.  Although he isn't actually "cut open" for his Mehta castings, the procedure is still performed under general anesthesia in the operating room and is considered a surgery.  Astonishingly, after all of his experiences at Shriners', Jax still loves the PACU.  We laugh at this fact because he cries when we pull up at the barber's shop ... yet he smiles, claps, and waves at the nurses and doctors in the PACU.  Maybe it's the Versed he gets when he's there?


We managed to keep him from breaking the surgical crib ... which he, by the way, loves being put inside [whose kid is this?] while the nurses collected his vital signs.

Here's Daddy demonstrating pulse oximetry on his ear lobe while Jackson watched.


For the first time E.V.E.R. (1 out of 5) Jackson was completely free from any illness/allergies/congestion ... and Mommy was finally a tiny bit less worried about him undergoing anesthesia.  Thank you, Spring!  Jackson's orthopedic surgeon, Dr. Cahill, came and discussed the plan with us before Jackson was sedated.  Although we have been given the option of postponing casting over the summer (due to the heat) and restarting in the fall, Mommy knows better because she has read Dr. Min Mehta's research studies on Progressive Infantile Scoliosis that demonstrate that this is dangerous for allowing the curve to relapse.  With Dr. Cahill's graces, we did not x-ray Jackson "out-of-cast" this time, but proceeded with casting regardless.  We will not stop casting Jackson until his spinal curvature is below 10 degrees-- standing, out-of-cast, and we know we are not yet at that point.

Speaking of sedation ... after the paperwork was signed, Jax received his Versed ...



And was very willingly (as you can see) whisked away to surgery.

Upstairs, we all waited the 1.5 hours while he was casted.  Oliver was a very patient little brother and did a wonderful job of keeping Mommy and Daddy's minds occupied while they waited on Jackson.


Unfortunately, Jackson is never as happy when he returns from surgery as he is going into the operating room.  This time, he had a particularly difficult time waking up from the anesthesia.  Both Justin and I think this was because he didn't sleep at all ... I repeat, at all ... in the car on the drive up to Philadelphia.

Also unfortunately, Jackson's recovery nurse had an issue with my picture taking.  I have never once been told not to use my camera at Shriners', but she asked me not to.  Of course, when she walked away I had a few nasty things to say behind her back (gasp).  Justin was slightly ticked off about it too ... and encouraged me to "go ahead and snap at least one photo," so I did.

My single recovery photo should give you a fairly accurate idea of how Jackson felt about Mehta casting #5.


After we applied moleskin and Super Mario duck tape to Jackson's cast, it was time to travel to radiology for his "in-cast" x-ray.  Luckily, nurse-no-fun didn't come along with us, so I was able to take a few photos of my boys!

Waiting on the elevator to go get x-rays taken.


Jackson's traditional casting day "tattoo" from Dr. Cahill.



Once the x-ray films were obtained, we received some really encouraging news from Jackson's surgeon.
  
In Mehta cast #5, Jackson's spine is being held at ZERO degrees!

With that news, we understand we are at a crossroads in Jackson's treatment for Progressive Infantile Scoliosis.  Our next trip to Shriners' Hospital will be an interesting one.  We will not know upon arrival whether or not Jackson will be casted a sixth time or molded for a plastic brace while he's under general anesthesia.  Dr. Cahill will take standing, out-of-cast x-rays of Jackson when we arrive at Shriners, and we will then make that decision.  Again, I will not allow Jackson to be "braced" until his spinal curvature is below 10 degrees per Dr. Min Mehta's recommendations.  So, in August we will travel to Philadelphia prepared to stay for about 3 days.  If Jackson needs a 6th cast, it will be applied as usual, and we will return home the following day.  However, if his curve is below 10 degrees, he will be anesthetized and molded for a plastic brace.  Then, we will stay in Philly while the brace is made and Jackson is fitted into his brace.  From what I understand, each brace lasts approximately 9 months (with intermittent checks), and Jackson will have no less than 2 braces for a total of 18 months.  He will wear his brace 23 hours per day.

As I always say, we are cautiously optimistic!

* * * * *

Mehta casting #5 was, by far, our most "carefree" casting experience at Shriners'.  Other than being bumped to the 9 o'clock slot, and not being allowed to take pictures (because, naturally, there is always something unfortunate), nothing major went wrong.  Therefore, we took our time on the trip back home, stopping at a HUGE Bass Pro Shop that we thought Jackson would enjoy.  We were right!


And, while we were there, I found our next major family purchase ... a new couch that I just HAD to have!


JUST KIDDING!
[who buys these things?]

When we got home that evening, Jackson had already adapted to his newest Mehta cast.  Just by looking at it, it appears to be one of the more "comfortable" casts that he has worn.  "Comfortable," I'm assuming, is a relative term.  Yet, Jackson has never once complained.




In fact, a little conversation we had this morning warmed by heart.  It went something like this:

Mommy:  "What is this?"  (pointing to Jackson's cast)
Jackson:  "Cast!"
Mommy:  "Do you love you cast?"
Jackson:  "Oh, yes!"

(Jackson rubbing his cast)
"Ooooo ... wow!"

He's our hero!

10 comments:

Justin Heath said...

He is an amazing son. I am very proud of his ability to always adapt so quickly to his new casts and to always have a smile on hand.

Nikki Prewitt said...

Nikki Prewitt----what a beautiful and encouraging story. I felt goosebumps as I have read some of your journey. Jackson is such an inspiration. Having a little boy whom I cherish the most in the world, I thought we were in for a lot of difficulties when he was born 7 weeks to early, but as always, God gave him and us the strength to pull through with minor complications. God is AMAZING! I hope you keep blogging, your're writing ability is fun to read and your story is inspirational! God bless you all!

Anonymous said...

I just stumbled across your blog -- my daughter wore a plastic scoliosis brace for a couple of her adolescent years and was sad when she no longer needed it! She said it felt like getting a hug while she was sleeping, and she missed it. I remember seeing little ones in the cast braces when we'd visit her orthopedist, but I didn't know what was going on. You've done a great job of explaining it! My daughter did well with her treatment; still has a 48-degree curve, but she didn't have to have surgery. She's now a DNP working in pediatric neurology at the same hospital she received treatment at and just had her first baby -- scoliosis patients turn out just fine :-)!

melissa said...

What a brave little man <3 I admire your strength and love. Thank goodness Jax has such amazing parents! I love reading about his progress and your ability to stay so positive amongst all the hospital drama. Totally thought you bought that hideous couch!!!! I'm anxious for August (as I'm sure you are!) and I pray for the best. Love and prayers and kisses sent your way!!!!

Jenn said...

So my daughter is 8 months old & she was just diagnosed with Infantile Scoliosis , her Ped thinks it Congenital but we are being referred to Children's hospital to the Pediatric Ortho Surgeon, how old was your son diagnosed and what can we expect? I am just in shock & terrified at the same time! Please any advice would be greatly appreciated! Thank you & this Blog is a well needed inspiration & source o information! Thanks!

JenHeath said...

THANK you to everyone for your sweet comments.

Jenn -- I would ABSOLUTELY LOVE to chat with you about Infantile Scoliosis. My email address is: jaheath86@gmail.com if you'd like to have more privacy than discussing things on here. I have some great resources I can offer you as well (like the personal phone number of the FOUNDER of the Infantile Scoliosis Outreach Program ... which is responsible for the Mehta cast program in the USA) ... AND she NEVER minds taking my calls!

To answer your questions:
Jackson was 4 months when we noticed his spinal curvature ... and 5 months when diagnosed with "Idiopathic Infantile Scoliosis" at Shriner's Hospital in Philly. His is NOT congenital as there are no bony abnormalities other than the curve itself. Usually that can be checked on X-rays and confirmed via an MRI (which Jackson had at about age 14 months). I am not an expert on the "congenital" form as I know sometimes treatment options can be different with that type. His scoliosis was determined to be "Progressive Infantile Scoliosis" at age 14 months when his curve jumped from 25 to 45 degrees. That's when we began treatment at Shriner's.

I'm not sure where you are from ... but depending on that ... I would urge you to be cautious taking your daughter to a Children's hospital that does not specifically treat INFANTILE scoliosis on a REGULAR basis. We were originally referred to DC Children's in Washington DC ... and we never went there after I did my research (I'm also an pediatrics RN). They treat PIS with "bracing" and repetitive surgeries. There are only a HANDFULL of hospitals in the USA that treat PIS with serial plaster casting like Jackson is getting. Casting is they only non-invasive treatment that is PROVEN to be potentially curative for PIS.

Honestly, if it is feasible for you ... I would recommend applying for your daughter to be seen at Shriner's. If you've read lots of my blog posts, you know that I have a love/hate relationship with Shriner's Philly. They can be a little difficult to work with, but the bottom line is that Jackson's is getting AMAZING treatment that is WORKING! And ... it is also 100% free of charge ... even if you're a millionaire! Eligibility is solely based upon the child's medical diagnosis. If you are interested, PLEASE don't hesitate to ask me to help you navigate the system. It really was NOT that hard to get "accepted" at Shriner's. Again, that is still your decision ... just my suggestion.

JenHeath said...

..... continued .....

As far as "what to expect," obviously that will be different for every child. From our experience, you should expect an initial X-ray and exam to determine the curve degree and the RVAD (very important number that many doctors do not measure) ... probably an MRI to rule out any underlying issues (Jackson did not have any, so try not to worry) ... then, treatment options. Everything I have researched has said DO NOT use "bracing" as treatment (what most docs suggest for infants) unless the curve AND RVAD are below 20 degrees. Otherwise, bracing will NOT work. With infantile scoliosis, the unfortunate thing is that even the BEST pediatric orthopedists do not see it very often and do not treat it effectively. I learned early on in this process that I HAVE to be Jackson's advocate and say "no" and "why" a lot! Other treatments are casting, the VEPTR, and spinal fusion. Both the VEPTR and fusion are surgical, so we chose casting which is not. Please keep in mind, however, that treatment options may change if your daughter's scoli is congenital ... I'm not sure ... I'm only speaking from what I know about Jackson's PIS.

If you do eventually end up casting like Jackson ... I can tell you this: casting days and recovery are tough ... but otherwise, quality of life is EXCELLENT!!! After Jackson's very FIRST cast, it took him about two weeks to "learn" how to walk without falling, bend over, sit up, play with toys, etc ... but then is was EASY! He never ever complains or cries over the cast. He LOVES looking in the mirror at it ... gets excited when he goes into the operating room to get a new one ... and says he loves it! He often gets his old casts out of his closet (yes, I've kept them) and plays with them. He thinks it's great! He can't take a tub bath or go swimming ... but he does EVERYTHING else like any other child would! Your baby girl will do just fine!

Okay ... I'm sure that was WAY TOO MUCH information ... but please email me if you'd like to chat more ... and we can even talk on this phone if you'd like. BEST WISHES!

Jenn said...

I just emailed you! Thank you so much!!

JenHeath said...

Hi Jenn ... I did not receive your email. Please try again as I'd love to chat. The address is: jaheath86@gmail.com
Jen

Unknown said...

Hi bless you and your family for all you had to go thru