Sunday, September 11, 2011

Taco Gets His Shell

"Consider what God has done: Who can straighten what he has made crooked?"
Ecclesiastes 7:13

It would be a lie to say that the title of this blog post reflects in any way what the last 96 hours have felt like to our family.  It would also be untrue to say that we were prepared for the reality of Jackson's Mehta casting, that the last few days have been easy, or that life is "back to normal" around our house.  However, it would be the greatest lie of all to say that we are not eternally grateful for the incredible work of the medical team who is giving Jackson's spine the chance to grow straight, the precious but few people who have supported us throughout this journey, and the astounding provisions of our Lord.

The week leading up to Jackson's initial casting on September 8th was nothing short of eventful.  We had returned from Myrtle Beach on Friday evening, and by Monday night Jackson was ill.  He was coughing occasionally and very snotty.  On Tuesday, I spoke with the anesthesia staff at Shriner's and was told that Jackson needed to see his pediatrician as soon as possible to help determine whether or not he was still eligible for casting.  This in itself doesn't seem so terrible, but throw in that the next available casting date was during the last week of October ... and it really ups the ante.  We had already waited almost 6 weeks from Jackson's last Xray (revealing a 44 degree curve) to receive this O.R. date, and waiting another 6 weeks could have been devastating for the progression of his scoliosis.  It is ideal to begin casting before the curve reaches 50 degrees, and we were already dangerously close to missing that mark.  Fortunately, the pediatrician could not definitively diagnose Jax with an "upper respiratory infection," and we left the office with a "wait and see what happens" plan.  She was somewhat suspicious of allergies and/or teething syndrome (because, naturally, Jackson is also getting all of his molars).  We hoped for the best and were told to make the drive up to Philadelphia with the possibility that they could cancel Jackson's procedure that day if he appeared too sick to proceed.

Then, because it wouldn't be us without a dramatic entry, we left our house at 1:00am and drove directly into the severe flooding in Pennsylvania.  The road we needed to take to the hospital was blocked off by countless police vehicles and traffic was literally stopped for miles.  So, relying on the GPS and Jesus, we left the beaten path and crossed our fingers.  Driving over flooded roads (some marked with yellow caution tape), we arrived at Shriner's well before time for Jackson's procedure.  There was no way some light rain some disastrous flooding was going to stop us!  Desperate times call for desperate measures.

Jax played in the lobby and on the 6th floor activity center before it was time to head to the pre-op area.

In pre-op, Jackson was seen by the anesthesia team who (thank you, Lord) felt it was safe to proceed with his casting, the research nurse, and Dr. Cahill, his pediatric orthopaedic surgeon.  He was also given a special pillow case with animals on it and a stuffed bird to take home with him.  The pre-op nurses were so awesome with him--as were the anesthesia residents.

This is "BJ" -- an anesthesia resident -- and Jackson's buddy.

Just before being taken into the OR, we put on Jackson's under-cast shirt, and he was given Versed and Tylenol to sedate him.  Once he was giggly and relaxed, "BJ" carried him into the OR, and Justin, mom, and I went to the waiting room.

The entire procedure took about 1 hour and 15 minutes, and Dr. Cahill came up to the waiting room to talk to us.  He told us that Jackson did very well with the anesthesia and that he got "good correction" with Jackson's spine.  Jackson's standing curve prior to casting was 44 degrees, and his supine (lying down) "in-cast" curve is 11 degrees!  That is amazing correction if you ask me!  Keep in mind, however, the supine curves always measure less that standing curves, so the actual difference is not quite so large as the number make it sound.  Also, when this cast is removed, there will probably be significant "bounce back" of Jackson's curve--thus, this process will take 6 months to 2 years to complete depending on the responsiveness of Jackson's spine.  Still, take heart, 44 down to 11 is awesome progress!

This is Jackson in the PACU, sleep sleeping off the anesthesia.

The peaceful slumber of anesthesia wore off shortly after we arrived on the surgical unit, and the next few hours were possibly the worst of my life.  You think childbirth is hard?  Try watching your baby cry and struggle while his vital signs are unstable.

Now, I promised myself that I wasn't going to let this blog post turn into a rant.  And I won't.  But, I have to share that our first nurse on the floor was absolutely terrible.  That is putting it nicely.  Besides being rude, cold, and horrible with children ... I found her to be unable to critically think.  I know my fellow nurses who read my blog will appreciate this most -- when Jackson awoke his pulse ox was 78.  Now, also throw in that he was congested prior to anesthesia and that he now had a cast encasing his chest!  This nurse (who because I'm being nice, shall remain nameless) kept repeating to me "they are just low because he is upset--he just doesn't like the cast--that's normal."

No. It. Isn't.

Finally, when Jackson's legs turned purple and his feet became swollen, she called the OR.  Dr. Cahill sent up a resident to look at the cast, and in the mean time, I insisted that she call respiratory to give him some oxygen.  Eventually, after we exchanged conflicting reasoning multiple times, she did.  I hate using my "I'm an RN too, and I think ______" card ... but this was a card carrying moment.  

Ok.  Enough.

The respiratory therapist was able to stabilize Jackson's oxygenation.  The resident trimmed the bottom of Jackson's cast to allow for better circulation.  And, Jackson fell back asleep.

When Jackson awoke in better spirits, it did everyone good.

Clearly, nothing comes between this boy and his food.

The next few hours were not pretty, and they were full of struggles and tears, but we made it through them.

There were sweet moments too, like when a young volunteer brought Jax this Cookie Monster to take home.  Which, like just about everything else, also make Mommy cry.

About 5 c'clock, Jackson's I.V. (in his ankle) was finally removed ... despite the fact that Mommy had insisted it be removed since about 11am so that he could get up and walk.  But then again, why would any nurse think it was important for someone who had undergone anesthesia--with a cold--in a cast restricting coughing/breathing--to get up and move around?

Dripping. With. Sarcasm.

And once the I.V. was gone, we took Jackson back up to the 6th floor to play.  He could walk almost immediately, albeit clumsily and top-heavily.  However, he could not play in the floor, sit up unassisted, bend to pick up a toy, or return to standing from the floor without something to pull up on.  In fact, he still cannot do these things.  The leaning curve for "cast life" is apparently very steep (much more so than we had anticipated)--and although it is heartbreaking to watch, Jackson's skills are improving everyday.  So is his acceptance of the cast itself.

By 6 pm, he was fast asleep.

Only one parent is allowed to stay overnight at Shriner's, and because I did not think I could mentally or emotionally stand much more in one day, I opted to go to the hotel with Mom while Justin stayed with Jackson.  He woke up early, but he slept through the night.

We were all so relieved to see how much better he seemed by the next morning.  Kids are so resilient!

We spent the morning with our new (and great) nurse, Courtney, preparing Jackson for discharge.  We put moleskin and tie-dye duct take around the rough edges of his cast to protect his skin ... that is the light brown material you see around the edges of the cast in the photos.  It can be changed if it gets wet or soiled over the next two months.  

A resident came up to our room to do some final cast trimming before we left.  Leave it to Jax--to love the cast saw--and laugh as it trims away the excess material to the tune of a loud dental drill.  Such bravery: let's pray it continues.

Then ... Dr. Cahill (and apparently also Jackson's new best friend) came up to our room to answer final questions and clear us for discharge.

This man is a hero to us--he is so brilliant, kind, and extraordinary!

Then -- we were off!

We hit the road for home around 11am--and, all things considered, besides a few emergency stops along the interstate--Jackson rode amazingly well.

The most difficult part--the first cast--is officially over.

As I mentioned before, the learning curve (for parents and child) is extremely steep with this type of treatment.  But, we are 100% confident that this is very best possible treatment for Jackson's scoliosis.  Please keep Jackson in your prayers as he learns to adjust to life in his cast.  We have a long journey ahead, but God has provided for us so far, and I know He will continue to do so.

So, it's official:

Taco Has His Shell
(I've always liked the crunchy ones better, anyhow)


Mom said...

AMAZING....I loved your blog post..the pics of Jax are so wonderful...God is good...and I know he will take care of our sweet boy....Love you...

Anonymous said...

Will continue to pray for your family.

Love, Sheila David & Gabe

Lauren said...

I loved this sweet post. I, too, have always preferred crunchy tacos. :) Way to be tough!

jill said...

OMG, we need to talk. So glad to hear you are home, and he did so well but still in awe of the things you spoke about! Working in the AM, will call you. Stay strong!!!