Friday, January 27, 2012

These Are The Facts

DISCLAIMER:  The following story is based upon actual events.  No parts have been fabricated or added to. No names have been changed to protect the identities of those involved.  These are the facts.

As those who follow this blog already know, Jackson went to the Philadelphia Shriner's Hospital on Wednesday for his third Mehta cast procedure.  Although the recovery from his first cast was difficult, Jackson did amazingly well with his second cast, so we felt certain this trip would be a breeze.  "It gets easier every time," other parents of casted children reassure me all the time.

I don't think anything could have prepared us for the reality of Jackson's third casting ... and the recovery which he (and we) are still enduring.

Wednesday morning began like any other casting day.  Astonishingly, Jackson is not afraid of the hospital, and actually quite enjoys playing around on the stretchers and blowing kisses to the nurses in the PACU.  It's often more of a struggle to keep him from breaking their expensive equipment in his excitement!  One of our favorite nurses, Jessica, was there to take his pre-op vital signs and prepare him for the procedure.

As usual, Jackson was also very excited about his casting day toy that Shriner's provides every time.

After our last experience with a laryngospasm during anesthesia, Justin and I were very nervous going into casting #3, and we had a very serious conversation about taping precautions with the anesthesia team.  Jackson's anesthesiologist for this cast, Dr. Perez, was absolutely wonderful, and having her responsible for his well being made us both feel better.  Once all the necessary papers were signed, Jackson received his Versed and was soon carried into the operating room.

This is Jackson on Versed ... a very giggly fellow.


The procedure took about an hour and a half, and around 9:30am, we were called back to the PACU to be there when Jackson awoke from anesthesia.  As always, he was very tearful during this process as the anesthesia wore off.  As strange as this sounds, Justin and I are starting to become accustomed to this process.

I think that's because within about 30 minutes, Jackson usually perks up and the rest of the recovery is fairly easy and routine.  Initially, it appeared that was going to be the cast for this casting as well.

But soon, everything was about to change.

Once he had calmed down and started to because alert, we laid Jackson down on the stretcher to begin applying moleskin and duck tape to his cast boarders as we always do after casting.  However, when we uncovered him, this was the first thing we discovered:

None of this was there when Jackson left us to enter the operating room.  The Mehta casting process requires Jackson to be "stretched" in traction in order to straighten his spine for the cast to be applied correctly.  Some how, the traction straps created this terrible abrasion and huge blister (which grew larger after this photograph was taken).  However, almost immediately, these skin issues we not what I was concerned about.

It is difficult to detect in the above photo, but I noticed that Jackson's belly/groin was bulging underneath the bottom border of his cast.  The cast seemed to be much higher on his hips than his previous Mehta casts, and something looked awry.  I called for his PACU nurse to come to the bedside, and she agreed and telephone Dr. Cahill from the OR.  After about 15 minutes, Dr. Cahill emerged and said the unthinkable:

"That is not right.  I don't know what happened.  We need to remove that cast and redo it."

Come again?
I am quite certain my mouth was gaping open.
Justin and I just stood there staring at the physician in disbelief.
How does that even happen?

Then I asked an almost involuntary, and probably dumb, question:  "By redo it, you mean redo everything?  As in, Jackson has to be re-anesthesized and have the entire operation performed again?  Today?"


We later discovered that in 10 years, this has never happened to any other child.  Pitiful.


Because Jax had had apple juice during his recovery, we had to wait two hours before the procedure could be repeated.  Thankfully, we were able to take him to the parents' lounge area to watch cartoons for awhile.  While we were waiting, I analyzed everything again and again in my head.  This was something that I never dreamed was even a possibility.  My head and heart were absolutely breaking.  Around 12:30pm, Justin and I received the call to bring Jackson back to the PACU.  There, he received another special toy for having to have the procedure done twice.  Thankfully, it distracted him enough while we signed all the papers again and while sweet Dr. Perez tried to calm my fears about double anesthesia.

This time, they gave him IV Versed and whisked him away to the operating room on the stretcher.
This time, I cried.

We did our best to make it through the next hour or so, and soon it was time to go back to the PACU for Jackson's second recovery.

This cast appeared to be correctly applied, so we proceeded with our usual cast preparation.

Sometimes, even though you look cool ... doesn't mean you feel cool.

Finally, Jackson's cast was prepared and Justin and my mom took him to have his in-cast X-rays taken.  We left the hospital at 4pm ... 10 hours after our arrival ... intubated, anesthetized, and extubated twice ... spine manipulated with traction twice ... having not eaten in 22 hours ... with a massive abrasion and blister that we did not ask for.  My heart was breaking for my baby.


The rest of the evening went pretty well ... about to be expected, all things considered.  Then, around midnight everything began to change again.  In the past, Jackson has done beautifully after casting -- sleeping through the night, and riding home the next morning like a champ.  This time, he kept waking up from his sleep screaming.  Eventually, no one was sleeping ... so we got Jackson out of bed.  He began to pass gas profusely and continued to scream.  The only things that seemed to make him feel better was to walk the halls of the hotel and to color.  So, that's what we did ... at 2:30 am.

(note the clock ... haha)

He also had a terrible cough and was refusing to take Tylenol or drink anything for us.  I called the Shriner's nurses in the middle of the night, and his pediatrician at 6am.  His pediatrician instructed me to have Jackson seen at Shriners before we left for home.  She was concerned both about cast complications and possible pneumonia.  So, we headed back to the hospital at 9am.  Dr. Cahill and the nurses listened to Jackson's chest, reviewed his X-rays for pneumonia, and dressed his blister with a special hydrocolloid dressing.  They did not feel there was anything clearly wrong, and we were told we could go home.  They assumed that the HUGE amount of gas in his stomach from double anesthesia was causing the pain.  Jackson slept for about 20 minutes after leaving Shriners, then he awoke screaming.  

His crying never stopped.  It took us 6.5 hours (usually 4) to get home as Jackson alternated between screaming and sitting silently with tears rolling down his cheeks in the backseat.  We even found ourselves stopping at a random shopping mall at one point, thinking walking around might make him feel better as it had then night before.


He screamed the entire time we were at the mall, and the stop only served to delay our trip home.  When we got home, he had a 103 degree fever, and I again called the pediatrician on call.  She thought that perhaps he had an ear infection or virus that just happened to coincide with his casting.

Just. Our. Luck.

Jackson was up multiple times throughout the night ... but seemed to feel a little better this morning after Motrin.  However, he took another crash around lunchtime today in which he could not keep his eyes open.  His temperature was 104.6.  Currently, he is asleep in Justin's arms and we are awaiting a 4:30 appointment with his pediatrician in Haymarket.

Needless to say, the last three days have been utter hell.  My heart is breaking for my sweet boy.  Your continued prayers are greatly appreciated during this time.  Thank you.


Mom said...

He is our Hero....God has special plans for this amazing child..I just know it...He is lucky to have you for his Mommy...and a wonderful Daddy that takes such good care of him...Love you and especially much Love to Jackson....

Crystal said...

HUGS you have me in tears! So I can only imagine what that was like for you that day. YOU are one AMAZING MOMMY!!! And have one VERY BRAVE little Jackson!!! Love you guys and think of you often!

Lauren said...

Poor baby! What an awful blister. :(