Thursday, August 16, 2012

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.




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.

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


melissa everson said...

Oh dear God, Jen. I cannot fathom being in your position. My blood is boiling just reading this!!!! How you stay so calm, cool and collected is beyond me. Your poor baby :'( i'd sue em for several counts of malpractice!!!!!! I pray to GOD that your sweet boy is healed. I pray to GOD you find an excellent Dr. I pray to GOD your family may find some peace <3 tons and tons of hugs and prayers sent your way.

melissa everson said...

Were you able to find out what the bulge on his pelvis was????

JenHeath said...

Hi Melissa,

We were not able to find out what the bulge was. Again, I think it was just an incorrectly applied cast. We had this problem back in January ... identical. However, last time the doctor admitted his error. This time, I was made to feel like a crazy, neurotic mother.

We are washing our hands of them! Unfortunately, I don't feel like I can sue them (although it has crossed my mind) ... because we need to stay in the Shriner's Hospital system for Jackson's treatment as they are one of the only facilities in the USA who do the casts. We are hoping and praying for a totally different experience in Greenville, SC. :)

I'm sorry to ask this ... and forgive me if I should know ... but how do we know each other? Or, do we? I know I have some followers that just found me in cyberspace and others who know me personally or through friends. Let me know. THANKS for following and for your support!