Monday, January 30, 2012

Something to be Thankful For

Lately, I know Shriner's Hospital has been receiving a pretty bad rep on my blog.  And, while we have certainly been displeased with many things, we are also thankful in many other ways.  

Here's a big example:

This is the EOB that came to us from our insurance in the mail today.

Keep in mind, this is only for one of Jackson's casts.

We owe provider:  $15,377.49
We will have to pay provider:  $0.00

That is something to be thankful for.

Sunday, January 29, 2012

Huge Triumph

While the last 5 days have been excruciatingly difficult ... and while we are still not "out of the woods" yet ... I want to share with you a huge triumph.

I know in the past I have shared a lot of numbers and measurements in regards to Jackson's Progressive Infantile Scoliosis curvature (COBB) and rib slant (RVAD).  This time, I have far fewer numbers to share ... and because his doctor only took one "in-cast" X-ray this time, we are not really comparing "apples to apples."  However, we are still very excited about the progress Jax's Mehta casting treatment is making to heal his crooked spine.

Without further hesitation, I give you:  two X-rays that speak a thousand words.

This is Jackson's last "out of cast" x-ray before we began Mehta casting.  His curve was 44 degrees and his RVAD was 27 degrees.  His scoliosis also worsened during the weeks after this X-ray was taken before our casting date in September 2011.

... And ...

This is Jackson's most recent "in-cast" X-ray taken 1/25/12 at Shriner's Hospital.  His current "in-cast" curve is 3 to 4 degrees, and his RVAD is 5 degrees.  His numbers will not be this good "out of cast," but the fact that they are this low "in cast" is a wonderful indication.


Friday, January 27, 2012

Update after the Update

Just wanted to give everyone a quick update after the update.  

We went to Jackson's pediatrician this afternoon, and he felt more comfortable sending Jax for a chest x-ray in case pneumonia had set in since the casting procedure on Wednesday.  Within about an hour, the results were back.  We are thankful that there is no pneumonia!  Jackson appears to have a nasty virus that is causing the coughing and fever.  So ... it's Advil, popsicles, and kisses for the next few days ... hopefully this will all be over soon!

Thank you for your continued prayers -- for healing, rest, and protection after all these X-rays!


The highlight of this week thus far:  finding a double-stacked Teddy Graham fit for the circus!  Hey, it's the small things in life, right?


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?"

Yes.

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.

Nope.

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.

Wednesday, January 25, 2012

Just Stopping By?

Just stopping by? Please take a moment to lift Jackson up in prayer for safe Mehta casting #3 today.

If you like to pray specifically, please pray for:
Safe anesthesia
His cough to clear up
Good correction from cast #2
Good tolerance of cast #3
Our nerves/anxiety
Safe travel

Thanks you so much! Updates to come as I am able.

Tuesday, January 24, 2012

Praise

A little praise this morning is warranted. I telephoned the Shriners PACU and talked to a real person. The automated recording was incorrect and Jackson's procedure is scheduled for 7:30am as it has been in the past. Thank you, Lord! A little burden has been lifted.

Please continue your much needed prayers for Jackson's cough to clear up and for the anesthesia staff to be cognizant and careful tomorrow. Safety is our #1 concern ... And good casting results would be a nice bonus.

Monday, January 23, 2012

Details

It's that time again:  Shriner's Hospital for Children time.  I can tell because my anxiety level is creeping skyward day by day.

I think that feeling must be a strange phenomenon experienced by mothers of "special needs" children -- the waxing and waning of anxiety and emotions.  Don't mistake that to mean that this process is not always emotional to a degree, because it certainly is.  However, usually after a few days home with a new cast, my nerves settle and my mind slowly stops spinning in circles.  Things have a way of returning to "our normal."  Then, in the days approaching another casting at Shriner's, I start my mental and emotional downward spiral.

I notice that is gets particularly bad two days prior to Jackson's casting (today).  I think that is because that is the day when I realize, time and time again, that my expectations as a patient's caregiver are, once again, not going to be met.  Now--I know this is going to happen every time since our first appointment--yet is still jingles my nerves.  Those of you who are "planners" will understand me best.  Shriner's does not give me Jackson's procedure time until the day prior to it.  And, since we must travel to Philadelphia, that translates to the day we leave home.  Usually, it is also in the afternoon.  When I really think about it, knowing the procedure time does not change anything ... yet the lack of advance notice still drives me absolutely insane!

Today I received an automated voicemail (after 5pm, so I could not call back) telling me that Jackson's procedure was scheduled for 9:30am.  Now, I have not spoken to a real person, so I am not sure that is correct.  However, if it is correct--that means Jax has been "bumped" into the second surgical slot by a younger child.  This sounds immensely selfish--but that makes me angry!  Jackson has to be NPO (not eat) after dinner on Tuesday night ... then his casting will not occur until between 9:30-11:30am ... then it takes 3-4 hours in the PACU to trim and pedal his cast.  That translates to Jackson not being able to eat between 6pm on Tuesday night until 4pm on Wednesday afternoon.  THAT is going to be miserable for everyone!  The protective mommy inside me wants to scream at the top of my lungs:  "I know that other child is younger, but Jackson is a baby too!!!"  

It is this two-days-prior time that I start being really negative about Shriner's Hospital in general.  That bottled up feeling that we are merely a "charity case," and that because their services are free of charge, my wishes and opinions don't matter begin to rear their ugly face.  We are stuck between a rock and a hard place.  Shriner's Hospitals are the only hospitals that offer authentic Mehta casting, so we must go there.  However, the operation of the system is not very personal (or professional at times) which makes it very difficult for me to trust their expertise.  I start to have that "beggars can't be choosers" feeling which is not pleasant as a mother--especially one educated in the medical field.

Then, there are the countless other pre-casting worries.  Jackson has had an occasional deep cough today--will that prevent him from being casted?  If not, will that put him at greater risk for anesthesia difficulties?  Will the anesthesia team pay attention to me this time when I tell them to adequately tape his ET tube, or will they carelessly let it fall out again and cause another dangerous laryngospasm?  How many students will be working on Jackson instead of qualified physicians?  Do I even have a right to refuse students since we are at a free teaching hospital?  Did we get any correction from cast #2?  Are they going to take more needless X-rays this time and expose Jackson to extra radiation?  What if he's already been exposed to far too much radiation?  

The list is endless.

I just keep having to remind myself that God is in control.  That "this too shall pass."  I must remember the two previous castings ... and how quickly Jackson was running through the halls of our hotel in his new cast.  I have to keep in mind that we aren't given any guarantees on life ... and that a car accident is far more likely to occur than an anesthesia accident.  And, as difficult as it always is, I must force myself to be thankful for the blessing of Shriner's Hospital for Children-- that is exists, that they understand authentic Mehta casting, that they are accessible to us, and that they are saving us upwards of $30,000.00.  I must focus and pray diligently for the "big picture."  That, through God, Jackson's spine can be healed.  The rest is just details. 
    

Saturday, January 21, 2012

Ketchup

. . . because everything tastes better with ketchup!



Friday, January 20, 2012

Cast-Off Day

Lately I have been feeling like I don't have much important blog material to post.  However, today certainly made the cut.

This morning marked the removal of Jackson's second Mehta cast!

He must have known that something exciting was coming ... because he didn't sleep a wink last night (ahem).  Still, we were all eager to wake up early and venture over to the Winchester hospital for his cast removal.



When the nurse came into the room with "Mr. Saw," there was more recognition than there previously has been.  While Jax certainly didn't "scream bloody murder" as we are often warned he will ... there was more apprehension and a few tears shed once the nurse began to cut through the plaster.  Thankfully the cutting process only lasted about 30 seconds with the saw ... then the nurse used some scissors to cut through the rest of the cast lining.



Soon we were "all done" with Mehta cast #2!  There is always a moment of hesitation as we lift Jackson's cast shirt off and look at his skin underneath.  However, besides the stowaway mini Cheez-It wedged against his skin for gosh-knows-how-long under the cast, his skin looked awesome!  Naturally, having not seen water, air, or sunlight for 9 weeks ... it was very dry, but there were very few red patches and zero open sores!  We were quite pleased!


As was Jackson.


While we waited on the doctor to come talk small talk about Philadelphia with us (sorry ... couldn't resist ... he seriously does nothing during cast removal appointments ... not sure why we pay a full co-pay instead of for a "nurse visit"), Jax took a few moments to check out his cast.  I wonder what he must think when he sees it off his body?



Soon, it was time to go home cast-free!  I always make sure to put Jackson's smallest available clothes on him for cast removal days, because it never ceases to amaze me how skinny he is once the cast is off.  The clothes he has on in these next photos are size 18-24 months, and they are absolutely HUGE on him.  Sometimes it makes me a little sad the realize that his real waist size is probably about 9-12 months right now although he's almost 21 months.  I also worry that he isn't gaining very much weight throughout this process (although he is growing taller like a weed) ... but his pediatrician isn't concerned.  It's a battle we are willing to face if it means curing his scoliosis!

Here's what I mean:

(and, yes, Maggie Mae is in the crib)

Once we were home, Jackson enjoyed a rare and wonderful bath in the tub.  Last time he cried when we put him in the water ... but this time he was ready!



Getting out of the bathtub was another story entirely.  However, there are more to come over the next few days while he is cast-free!

Thus begins what I refer to as "bubble boy week" -- a.k.a. "the days between cast removal and cast replacement" in which we have to be stickler germophobes around our house.  That's what you come in!  Please start praying now that Jackson stays 100% free from illness until after 1/25/2012 (Wed.) when we will travel for his next Mehta cast placement.  Also, go ahead and start praying for good casting results and SAFE anesthesia and casting #3 (and for mommy's nerves).  As far as results are concerned, we may not have many numbers to share after cast #3 because we were told last time that Dr. Cahill may only take in-cast X-rays this time.  Justin and I agree that we are a little relieved.  Last casting's miscommunications and measurement errors caused a lot of stress ... so, we are thankful for a little break from information.  I will, however, share anything we discover on here as I am able.

But, so you can share in our naked-eye-joy ... a comparison of Jackson's spine thus far in his Mehta casting journey!

Pre-Cast #1 (September 2011)

Pre-Cast #2 (November 2011)

Pre-Cast #3 (January 2012--today)

Praise the Lord!
... and keep those prayers coming ...

Wednesday, January 11, 2012

Not Me Monday (special Wednesday edition)

1.  I did not step on one of Jackson's trucks tonight and go careening around my bedroom before falling into our cedar chest full-out-Home Alone-style.  Oh no!  That would be clumsy of me!

2.  Upon changing Jackson's diaper in the nice hidden bathroom inside Pottery Barn Kids at the mall, my mom and I were definitely not puzzled by a strange foul odor.  We did not conclude that another mother must have used the dirty paper towel at our feet to wipe her kid's bum.  My mother would never attempt to kick that paper towel to the side.  At that time--when the paper towel squished--the lightbulb inside my head did not go off saying "Holy moly--that's Jackson's poop!  You slung it out of his diaper when you threw it away!"  Heck no!  That would be disgusting.

3.  I am not bothered to the core by the fact that Calliou (the cartoon character) has not one strand of hair upon his head although he is supposed to be 4 years old.  I certainly do not feel a need to express my disdain for this hair omission every-single-night.  How trivial.  Not me!

4.  I have not become "that lady" inside Walmart who brings an empty banana peel to the cashier and asks her to "please weigh one of my bananas twice because one has already been eaten."  My child absolutely does not eat a banana every time we enter the produce section without fail.  Nope!

5.  My favorite purchase this week is certainly not the 12-count miniature Tums bottle that I can carry inside my wallet.  No way!

What have you not done this week?  I'd love to know!

Sunday, January 1, 2012