Shane's photo in The Hill: The Washington Scene

National Association of Children�s Hospitals 2011 Family Advocacy Day

Thanks A Million!

First, our family would like to thank Meri Armour, Maureen O'Connor, the Le Bonheur Family Partner's Council, Hillary Adams, N.A.C.H. and Tricia Morris.  Our family learned so much on this trip to Washington, D.C.  Shane has declared his future aspiration as "President of America."  And his little sister, Bradley, wants to be "Tricia" when she grows up because she knows her way around the big city!

We had the opportunity to meet families from across the country, made new friends and hopefully influenced some legislative people! The halls of Congress came to a stand still with busy adults stopping to greet our kids and inquire about their visit. The meeting Senator Alexander's staff was very informative and encouraging.  Senator Corker was an absolute hit with Shane and Henry! (Henry is his new friend from Johnson City,TN.) Shane cannot stop talking about Congressman Steve Cohen, he says, "He's a cool guy like me!" We were able to personally thank Congressmen Cohen for co-sponsoring the reauthorization of the CHGME bill.  And it is an understatement to say that they both adore Congressman Marsha Blackburn and think that she is "great fun" and "pretty"!

Shane delivered his speech on cue with all the gusto a five year old could muster. We are very proud of him and his sister and feel they did a great job representing West Tennessee.  And I can confidentially say that our legislators are very concerned about our children's health issues and are committed to supporting their needs.

As a citizen of Memphis, I am grateful to have Le Bonheur Children's Hospital for our kids. As a Tennessean, I am proud of our legislative representation.  And as an American, I am glad we live in a democracy where varying viewpoints can be shared.  And where a 4 and 5 year old can sit with their leaders in the nation's capitol and be truly appreciated for who they are and who they may become someday.


Thank you,
The Casey Family

16 - Family Advocacy Day #1

We have had the pleasure of meeting so many wonderful families her at the 2011 N.A.C.H. Family Advocacy Day!  Shane has made fast friends with Henry from Johnson City, Tennessee.  They are both 5 years old and are enjoying each others company.  Maxwell from California is also great (he is the "mini-Darth Vader" from the Super Bowl commercial).  He trained us all on how to use "The Force" on our legislators tomorrow! It is quite complicated actually!

Back to business:  We conducted one taped and one live radio interview this morning with stations in Nashville and Chattanooga. We have a video interview scheduled for 4:10pm.  Justin Beland and Tricia Morris, our NACH reps, are super too!

We have meetings tomorrow morning on Capitol Hill with the following:
Senator Alexander
Senator Corker
Congressman Cohen
Congressman Blackburn
Congressman Fincher
Congressman Nunellee

13 - Why I Advocate for Children

If you have read the previous posts in the blog it should be crystal clear why I advocate on behalf of Le Bonheur Children's  Hospital.  Le Bonheur clearly was the catalyst in saving my son's life! Not once, but TWICE.

Currently, I serve as the Chair of Public Policy & Advocacy Committee for Le Bonheur's Family Partners Council.  The council is comprised of over 15 families who regularly enteract with Le Bonheur administration and physicians to help the hospital remain focused on important issues, sometimes challenging Le Bonheur out of its comfort zones and encouraging the hospital to consider new and more collaborative ways of providing care. The Pulic Policy & Advocacy Committee acts as the liaison between Le Bonheur's Public Policy and Advocacy Board and Le Bonheur families and to engage those families in representing the public policy issues and initiatives to government officials and the community.

Every child deserves the very best health care and access to it! Follow us on our journey, July 25-26, 2011 to Washington, D.C.   We are participating in the National Association of Children's Hospital's "2011 Family Advocacy Days."  This event allows us the opportunity to go to Capitol Hill and share our experiences with Congress.  This event truely gives kids and families a voice!

You are invited to follow us on this journey!

12 - Shane Today!

Today Shane is a happy, vibrant 5 1/2 year old!  He has been assessed and found to be "intellectually gifted."  He began Kindergarten a year early and received gifted-enriched studies at another school as well.

Thank you God!

11 - The Second Time!

We finally arrive at Le Bonheur.  I team is busy working on him in ICU.  We stand there just outside his room. 

Suddenly, the team starts to disband and exit the room.  The nurse then deams the light...I almost feel to the floor.  Then when she turned to me she had a sweet smile on her face and said, "Mom? We got stable and he's just resting for while."  Thank GOD!

We spent 4 days in ICU and another 3 on the floor.  The most I was ever able to find out about this was that for some reason his left lung collapsed and we had to wait for the "plug" to dislodge. Why all this happened is not known.  I believe it was too much anethesia (morphine).

So, Le Bonheur saved Shane's life yet again.  A second time!

10 - Flying Away

At 4 years old Shane went to a local suburban hospital with a small pediatric unit to have a routine outpatient tonsillectomy and adenoidectomy (like millions of other 4 year olds).  The surgeon came to the room and reported that the surgery went smoothly and Shane would be on his way soon from recovery.

Big sigh of relief, my son’s surgery went well!  We are waiting for him to be brought back to the room from recovery when I begin to hear this strange deep gurgling sound coming progressively closer to the room.  I jumped up and said that’s Shane!  My parents looked at me like I was nuts.

I went to the door and sure enough it was Shane being carried by a nurse walking along side his gurney.  He was having difficulty breathing.  The nurse was rubbing his back and saying, “go ahead and cough it on up!”

“Cough what up? What on earth is wrong?,”  I asked.  I was told he just had a little something to cough up and he would be found.  She laid him in the bed and went about checking his vitals.  He was still heavily sedated and his eyes were closed.  His breathing got progressively worse.  He was struggling so hard for air.  It had been over an hour and a half and he still was not waking up either.

I requested help for him.  Several specialists came in.  They said we needed to just give him more time.  They did  not want to have to intubate him because of the bleeding he would incur in the areas where he had just had surgery.

I was about to freak out AGAIN!  I called our pediatrician.  He called the surgeon and notified him.  The surgeon made some calls and then called me. 

Shane was life-flighted from the suburban hospital to Le Bonheur Children’s Hospital.  I had to drive for over an hour in rush hour traffic from Collierville, Tennessee to Downtown Memphis.  It was surreal watching the helicopter take off with my baby.  I was driving my car and watching the helicopter fly overhead, over the trees and off into the distance until I could not see him anymore…

I can not describe the feeling of helplessness.  Was he still alive up there?  What were that doing to him up there?  It was precisely at that moment that I began to change my way of thinking about my role as a mother…for both of my children.
I now understand that God has plans for them that do not fully include me.  I can not save them from harm.  I can only protect them to a certain point. 

While stuck in rush hour gridlock and bowed my head and openly said, “God, thy will be done! How ever this ends I know it is your will.  Help me to accept that which I can not understand Lord.  Give me strength to accept your will.”

I finished this prayer.  I then turned to see my mother looking at me in absolute horror.  She was concerned that I was giving up on Shane or that I knew something more and wasn’t telling her.
Obviously, we deal with life’s challenges differently.  I refused to try to validate my prayer…

9 - Happy Mother's Day

Mother's Day 2008, we had spent the night at my parent's home.  Shane climbs into bed early that morning and collapses on top of me.  His little body was burning hot. I sit up to remove his pajama's and he suddenly starts having convulsions, foaming at the mouth and eyes rolling in his head.  I run screaming from the room and lay him on my parents bed.  My Dad called 9-1-1.

We go to the hospital and found that he had a febrile seizure (thankfully not epileptic!!!).  Febrile seizures are brought on by high fever and are considered common in young children.  Got the fever down and returned home.

Happy Mother's Day to me!!!

8 - Cured!!!

From 6 months of age to 14 months we were in and out of Dr. Clarke’s office and had several MRI’s and EEG’s.  He began to show major progress in his development at 12 months.  Shane was weaned off all his drugs except for Topamax.  At 14 months of age he began to wean off the Topamax.  By 16 months Shane was developmentally on track but not yet walking unassisted. 

Dr. Clarke ordered his last series of tests and Shane was found diagnosed as cured of his epilepsy!!!  Shane began walking fully at 18 months.  By age 2 he began showing signs of advanced cognitive abilities and was charting with developmental milestones of a 3 ½ year old.

Life went back to normal!

7 - Second Opinion

The seizures were under control. What a relief...but I wasn't relieved.  My bouncy baby boy was so drugged and catatonic that I couldn't stand it. It was like he was locked away inside his little body and could not get out.

The doctor stated that it was either this or seizures.  Literally those were my options.  Something would not let that settle with me.  I decided to get a second opinion.  I did a web search and found the names of the new neuro team out of Texas that had just moved our Le Bonheur Children’s Hospital. I called my nurse for assistance in the proper way to obtain a second opinion.

During my doctor’s rounds I told him that I planned to obtain a second opinion.  He asked why and he thought I was happy that the seizures were arrested.  I explained that I was relieved that the seizures were no longer evident, but that the heavy sedation would leave him unable to develop beyond his current state.  The doctor said, “Fine.”  He then left the room.  My parents looked at me and I just told them I felt that I was making the right choice.

My logic behind getting the second opinion was this:  If the new doctor suggests we do anything differently and/or addresses the developmental concerns…I would go with the new doctor.  I then called the office of the Wheless Neurology Group.  They soon sent Dr. Dave Clarke to evaluate my son, review his records and then meet with me.

Dr. Clarke suggested reductions in meds, noted the obvious lestlessness and reasons why and what should be done to provide a better quality of life.  I was sold immediately.
We made the change that day. 

The first order was to stop one drug immediately and run tests to determine the root cause and rule out the most life threatening possibilities.  After MRI’s, brain scans and a multitude of blood and urine test the results were in.  The doctor was able to rule out tumors, lesions, trauma, etc.  It was then that the infantile spasms were conclusive.

We were then ready to be released from the hospital.  Or so we thought!  Our insurer refused to cover the ACTHAR drug.  It cost about $1,200 for a small vile of gel that I had to inject into my son’s thighs twice daily.  Dr. Clarke stated this drug was critical and he would not release my son from the hospital without it after about 24 hours of phone calls and faxes we were released from the hospital.

6 - Arrested!

A nice, yet very cavalier doctor comes into the room and introduces himself.  He stated that he had reviewed his brain activity from the monitoring control room and that my son suffered from infantile spasms. (The same thing the pediatrician who had never seen us before had said over the phone!)

He rattled off all of the drugs he was going to place him on in hopes to stop the seizures completely or at least make them less intense.  He stated that my son would be lethargic because of such heavy doses, but the seizures just might be able to be controlled. 

In no time, the drugs began to be administered through his IV.  He did not suffer another jerking episode.  The only indications we had when something was going on were the long stares.

5 - Geriatric vs. Pediatric

My pediatrician, whom I had not seen or heard from in days, wanted to speak with me.  I took the phone at the nurse’s desk.  He asked what made me think I needed a neurologist.  I told him something is going on neurologically and I want it addressed immediately.  He stated that he was just about to request that one of the top gastroenterologist check in on my son.  I told him to request the neurologist instead. I had had enough and that I was not pleased with seeing every member of his group and not him.  He did not respond to my last statement and said that if I would hand the phone back to the nurse he would see about getting a neurologist to see him.

Several seizures later, the next morning a neurologist comes to check on my son.  I recognized the doctor immediately.  He was the neurologist for my grandmother who has Alzheimer’s!  He talks, I listen and say nothing.  He said that since my son appeared to be resting comfortably he would come back the next day during his rounds and check on him again.

Note: I forgot to mention that I never, ever, left my son’s unit during this hospitalization. Never!

Late that night, while my mind was racing, I remembered reading in the local paper that Le Bonheur Children’s Hospital had just brought on this top pediatric neuro team from Texas.  I decided that Le Bonheur was where my son needed to be.

The geriatric neurologist came back as he promised.  He said that my son looked really good. I did not explode, instead I just said, “I know you are an adult and geriatric neurologist. Are you a pediatric neurologist too?”  He said, “Well no, but the human brain , etc., etc.” (Because I stopped listening to him after he said he was not a pediatric neurologist.) 

I then said I want him to go to Le Bonheur an to be seen by pediatric neurologist.  He told me that it would probably be weeks before he could be put in a bed there because of the demand.  He hastily left the room stating he would talk with my pediatrician. I made some phone calls myself.   

Within hours, we were taken via ambulance to Le Bonheur Children’s Hospital.  My son suffered a two seizures while we were in route.  Shane was taken straight to the epilepsy monitoring floor.  He suffered another seizure while the electrodes were being placed on his head. 

His big beautiful curly looks could not be seen because his entire head was covered with a gauze helmet to keep him from pulling out the wires.  He was miserable.

This bed was a large metal crib.  They placed leather panels around it to keep him from hurting him self on the hard metal.  He couldn’t see out and got really upset.  My husband help me climb over into his crib.  I held him and fell fast asleep.

Hope comes in the morning!

4 - From Bad to Worse

On April 26, 2006 the tests began.  Blood was drawn.  He was catheterized.  He had another more intense jerking episode.  It took longer for him to regain consciousness. 

The doctors decided he needed a spinal tap.  I was advised that the procedure was very invasive and could at worst leave him paralyzed.  They said he will scream loudly and that I could not be with him.  I could not wait in the hallway.  I could not wait in the waiting area.  They advised me and my family to step outside the hospital for fresh air for about 20 minutes.

I held him and cried and prayed.  Then I had to go and leave him to this pain.  I sat in a heap on the curb outside of ER.  I remember rocking back and forth and my mind was racing. It seemed to take forever until the nurse came to take me back to see him.

The procedure was successful a small bandage was on the lower middle of back.  He was asleep.  I was afraid to touch him, but as soon as I got near him to kiss his head he opened is eyes and I scooped him up.

That was the first of many days that I spent laying in his hospital bed holding and comforting him. They rolled us from the ER to his assigned room in the hospital with me holding him in the bed.

We spent twelve days in the small five room children’s section of the adult hospital located about 10 minutes from our home.  The seizures were now more frequent, more intense, lasted longer and eventually required him to be placed on oxygen.  But, no one, other than me, family, and friends got to witness the episodes because the arrangement was that when he had a seizure press that call button for the nurse so that medical staff could come to the room and witness it.  Not one nurse ever made it to the room in time to witness the seizure in action.  They were only able to witness the aftermath.

Through all of this, I saw his pediatrician twice, and the host of doctors that made up this large pediatric group stopped through daily.  They all thought it to be reflux and ordered several different formulas until we ended up with the $100 cans of Neocate.  But the seizures kept coming.

All of this had changed my baby into a quiet, slow moving and confused little boy.  The sparkle in his eyes was gone. His observant was inquisitive nature was history.  He was just a shell. I couldn’t take it anymore. 

Finally, I got my wits about myself and began to think.  I needed a new pediatrician.  I immediately called on physician that my OB had recommended long before Shane was born.  I looked him up in the hospital’s copy of the YellowPages directory. This physician returned my call a few hours later.  This physician, who I had never met, listened intently and spoke with me for almost 30 minutes.  He said that based on my observations it sounded like a rare form of epilepsy called infantile spasms.  I was advised to request a neurologist be assigned to his case and told that I needed to be at Le Bonheur Children's Hospital.

Upon hanging up the phone, I immediately went to the nurse’s station and requested a neurologist. They stated they would contact my pediatrician and let him know of my request.

I could not believe what happened next.

3 - No! No! No!

We made it across the night without another episode. He awoke the next morning his usual happy little self. I feed him. He burped. Normal.

After a quick bath, I dressed him and decided to drive to the nearby pharmacy to pick up my medicine. That short ride took forever. My eyes were shifting furiously between the road and my rearview baby monitoring mirror. All was fine.

Got him out of the car and entered the pharmacy. We were greeted with the all so familiar strangers commenting, "What a beautiful baby!" We made it to the back and picked up the mess and were headed for the door. Then he suddenly stiffened up and his head jerked back. I immediately held him tight and fell to my knees screaming, "No! No! God what is wrong with him! No!"

After several strong jerks. He was completely unconscious and his breathing was labored. Someone had called 9-1-1 and I could hear the siren at the door. They immediately preyed him from my arms and began checking his vital signs. A fireman was asking me questions. I could not speak and began to get light headed. He grabbed my arms and I took a deep breath, regained my composure and slowly answered what I could. We were whisked away to the adult hospital with a small children’s unit just two blocks away.

He was awake but very tired by the time we arrived at the ER. He was not happy with all the wires, beeps, sirens and noise. Almost every staff member had been called to come see this beautiful baby. Several said, "He looks perfect now Mom! Doesn’t look like anything’s wrong with this little fellow." I just wanted to strangle them.

Within an hour all the grandparents, cousins, aunts, uncles and friends arrived and packed the tiny ER room. He had gotten fussy and very tired. After whipping his eyes a few times he just stared off. I said his name a few times...and then it happened again. The violent jerks sent adults gasping and running from the room in horror.

2 - He just laid there.

Mid-April of 2006, I'm in bed feeding my beautiful, happy 4 month old baby boy his bottle. Suddenly, his body stiffens like a board and his head jerks back violently as if his neck would surely break! I struggle to keep him secure in my arms. It immediately happens again. I quickly lay him on the bed. My heart is about leap from my chest.

Then he just laid there. Motionless, eyes fixated on the ceiling. He was breathing. I was so confused and scared. I remember thinking, "Did this just happen? Did I see what I think I just saw?" I was panicked and I knew I had to get myself together.

He moved his eyes toward me and reached out his arms. I quickly scooped him up and held on to him for dear life softly saying, "Everything is okay! Mommy's here! Mommy loves you!" I just kept pacing the floor and repeating that mantra a hundred times until he whimpered the sound of hunger. I gave him his bottle. This time I held him more upright. Maybe his feeding position had something to do with what just happened.

The feeding ended. He burped and then he giggled. I was cautiously relieved...a little. I knew I had to calm down because he was so tuned into to my emotional ups and downs.

I called our pediatrician and left a message for him to call back. When he returned the call he said it sounded like a severe reflux reaction. I was advised to call the office first thing Monday for an appointment.

I did not put my son down all that afternoon or evening. I did not take my eyes off of him all night…except to blink. We never made the appointment on Monday.

1- God's Gift

Shane entered the world at 8 lbs. 11 oz. on Wednesday, December 7, 2005. He was born on his due date! To say that his birth was highly anticipated would be an understatement. I was 38 years old and he was my miracle baby. He was not a product of fertility treatments or anything artificial. He was a product of a whole lot of prayer!

During his delivery, I was only able to dialate to 3cm and required an emergency cesarean.  I was told upon birth that all his vitals were fine.  He didn't cry much but he was very observant. His sugar was a little low, they gave him a little "sugar water" and then everything was fine. He was beautiful from the moment we laid eyes on him.  He even had deep purple lips...just like his grandmother.

We soon went home.  He slept and ate on schedule.  He was a great new born. He grew and cooed and flipped and responded right on schedule.  Motherhood...check...I had it all under control.

Just before Shane turned 4 months old, I felt an overwhelming desire to have him baptized.  I first had to decide on a church for us and join myself.  I chose the church that my father and his family had belonged to his whole life.  There were those who expressed displeasure with my "hasty" decision and felt that he should be allowed to choose for himself  when he was older. 

One day shy of turning 4 months old, on April 6, 2006, he was baptized.  Twenty days later, on April 26, 2006, he was rushed to the emergency room...he was slipping away...fast.