Monday, August 1, 2011
Thursday, July 28, 2011
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
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
Monday, July 25, 2011
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
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
Thursday, July 21, 2011
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!
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!
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!
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…
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…
Subscribe to:
Posts (Atom)