Home Is Where The Heart Is

Leaving through the hospital doors with my arm around Lynnette was breath taking. Was I anxious to get home? I still don’t know. Shock is the word I might use. I could not believe I was going home.

Picture: (Top- Becki was one of the many nurses who cared for me. I loved each nurse who dealt with the old man in the kid's hospital.)

Primary Children’s Medical Center had become my home and family. Leaving them behind was an interesting emotion. Of course, patients continue to cycle through their care.

Whatever joyous celebration we experienced in my recovery, the nurses caring for me signed off their responsibility and went back to work caring for the many sick children still fighting for their future. And yet, there is not much public recognition for these quiet and faithful employees who bless so many lives.

After picking sweet Eden up from a cousin’s home we drove up our street noticing the many pink and red heart shaped balloons my sister Carol had placed all over our front yard on trees and bushes. I was proud to know our neighbors knew this was a great day in our lives.

Picture: (Middle- Barb Wright began caring for me in 1975. She has helped thousands of cardiac kids in the EKG lab at Primary Children's Medical Center)

Our neighbors had mowed the lawn and trimmed everything. They even picked the tomatoes they had planted in a garden they helped create many months ago. I had told Lynnette I was looking forward to eating those tomatoes not knowing if that would really happen.

I expected to be home shortly before Thanksgiving or Christmas. My anatomy and symptoms were beyond anyone’s true comprehension. And we planned for the worse while trusting in God and his ability to orchestrate the events of our lives.

We have a quiet home on a peaceful street. Walking through our front door and observing the blessings poured out upon us from all our hard work over the years was humbling. Peace permeates the small rooms and strength fills the walls. I attribute this to Lynnette and her divine nature. She's created something beautiful.

This has been our refuge. We've had many challenges and decisions to make therein which would effect our future. There will be roads to take, and mountains to climb in our future. Amidst our future joy, celebration, and happiness, we will face heart-ache, pain, and grief. However, I find great comfort in knowing the God of Heaven is a loving and kind Father who will help guide us as we seek Him out. I'm reminded of these words from Harold B. Lee, “The most important work you and I will ever do will be within the walls of our own home.” Our souls will stretch and our wisdom will increase from our experiences and we will be that much more prepared to strengthen others who are going through hard times.

And might I add, if you are not a religious person or doubtful of such strong statements I make about God I encourage you to cling to goodness and those who want to be good. Serve them and befriend them. They will lift you. They will buoy you up when life gets dark and challenging. It is through their goodness that you will feel the literal arms of God around you.

Picture: (Bottom Right- Back home with the family)

Spending a quiet evening at home with my daughter and Lynnette was something special and nostalgic. I think Eden went through 4-5 outfits until we were able to get her off to a ballet/tap dance class in her cute pink tutu. Of course, she kept touching my chest to feel my heart. And from time to time with a vulnerable sweet smile she’d ask, “Dad, hold my hand?”

And now more than ever I know home is where the heart is. And with tears of gratitude in my heart I know I’m home to stay.

________________________________________________

As much as I enjoy maintaining livingforeden.com there will be one more entry and a short video of our journey. Then this blog will be closed until after the holidays. I’ll be spending time with family, compiling my message into a book, and preparing for a long journey ahead advocating the growing needs and education of those living with congenital heart disease, as well as organ donation.

Please visit me at my music site and sign up for the newsletter or go through the various options of finding me on twitter, facebook, youtube, and other places. I would love to keep in touch.

Fitted For A Better World

Today, I walked for 30 minutes; nearly tube free with the exception of my chest tubes draining fluid, and without oxygen, from my room at Primary Children’s Medical Center over the long hallway to the University of Utah Medical Center. And although I have to gown up and wear a mask and gloves to protect myself from infection I have never felt so alive!

(Right Photo - Taking my first walk to a window where I can see Mount Olympus which I plan to climb June 9, 2010 to overlook the beautiful Salt Lake Valley.)

I should be home soon. But, I’ll be back every other day for the usual poking and prodding, biopsies, and rehab typical of a post-transplant life.

Eventually, I’ll have a stabilized drug regimen and be on my way to a most normal life with a new transplanted organ.

And what to do now?

(Photo Left - Chief of Cardiothoracic Surgery, Primary Children’s Medical Center Aditya K. “AK” Kaza, M.D. showing my family my old 5lb heart.)

Over the next couple of weeks I plan to wrap up this blog for a season in order to focus all my time and attention on my wife and little girl. I think I’ll have Eden take me shopping for a bicycle. I’m sure she’ll have a good idea. Maybe she’ll buy me some tap shoes since she is also taking a dance class.

This blog, Living for Eden, will remain online and available as a resource for the folks googling medical information and looking for personal help. Those of you interested in continuing to follow my situation I suggest visiting my music career website and signing up on my mailing list. I will let people know how I am doing until I choose to blog further. Click Here to sign up.

(Photo Right - My kind and wonderful P.I.C.U. nurse removing IVs from my jugular vein.)

The road has been long and difficult. We have experienced the roller coaster of emotions. There have been deep discussions in the darkest hours of evenings concerning the “what if?” How would my family live without a father and husband. Such questions are sobering. Many tears have flowed.

We’ve spent countless hours on our knees seeking help. And the help came through the arms of those who love people and love God. I have learned a great deal about the character of my community. There is more virtue and good in the world than evil. People quietly go about doing good and I’m moved to follow in their footsteps.

(Photo Right - PCMC Director, Adult Congenital Cardiac Program Angela T. Yetman interacting with my family in the surgical waiting room.)

I’ve shared insights and probably preached principles I hope have helped your life. I know, not alone, but by so many others, that you cannot learn joy in this world without experiencing the challenges of life. Through our suffering we gain important virtues; wisdom, compassion, love, charity, hope, faith, sacrifice, and many more.

"We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world,” said Neal A. Maxwell.

This experience has transformed and empowered me. I would not trade this past year for all the wealth or power in the world. But, of course, if I had all that I would have the ability to shout from the rooftops three eternal laws from the New Testament which most people can agree with; Love the Lord thy God with all thy heart, and with all thy soul, and with all thy strength, and with all thy mind; and thy neighbor as thyself.

And finally, there is a powerful statement in the book of Ephesians, which is a standard I hope to live by, which states, “Husbands, love your wives, even as Christ also loved the church, and gave himself for it.”

(Photo Right - Talking on the phone with my friend and former adult congenital cardiologist Michael Adjei-Poku.)

Radio Interviews and Sacred Piano

With all that’s transpired this past year I’ve put aside my music career to focus on family and getting a new heart. I have been able to maintain contact with fans in newsletters, including consulting a few musicians. Nonetheless, it's been difficult and a financial challenge as a father to put work on hold.

In the beginning I canceled a little over 20 gigs not knowing if I’d be available. In addition, I stepped away from the recording studio. My self run instrumental label Stone Angel Music released only 1 record from guitarist Ryan Tilby.

And yet, musically, I couldn’t be more full of emotion and appreciation. It’s as though music is flowing so deeply inside of me as to burst forth into symphonies offering praise to God for His kindness and mercy amidst suffering. He has taken good care of my little family. It's hard to sit still and not share something.

I'm grateful to Shadow Mountain Records. They reached out to me earlier this year in an effort to keep sharing my music. As a result, this past week they've released an album called Sacred Piano on my behalf. It's been interesting to sit back and let them do all of the work.

Sacred Piano came out of my desire to share 15 of my most personal songs from my 15-year career in relation to this sobering experience. The album features original and arranged piano compositions. In addition, while at home I was able to record three new pieces on my old grand piano for the CD, which include Gracie’s Theme, Amazing Grace, and Were You There?

This past week I had a couple of radio interviews over the phone from Primary Children’s Medical Center. We discussed everything from how I feel about waiting for a heart transplant to recording music.

I wanted to share these conversations with you in an effort to lift your day and give you hope in your own bright future. God can work miracles. It might not be a physical cure to a physical challenge but rather a spiritual change of heart within each of us. He has done this for me.

Interview with Steven Kapp Perry on The Cricket & Seagull Fireside Chat
LISTEN TO THE INTERVIEW

Interview with KSL Radio’s “People of Faith with Carole Mikita”
LISTEN TO THE INTERVIEW

More information on Sacred Piano visit:
http://www.paulcardall.com

One Year on the Waiting List | Miracles

As an adult I am beginning to know the meaning of St. Paul’s words to the Romans, “We glory in tribulations… Knowing that tribulation worketh patience; and patience, experience; and experience, hope.” It is true. I have been blessed my whole life to have severe congenital heart disease. I am far from perfect and needed this in my life to teach me things I could have never learned without it. As a result, I am a witness of God’s hand in our lives. I’ve observed many miracles in my own.

Last Wednesday I was admitted to the pediatric intensive care unit to begin receiving additional milrinone and nutrients intravenously. I’m also beginning some physical therapy.

These changes are an effort to help my organs hold steady so my body is prepared for the challenging transplant. In addition, I am getting some much-needed rest.

Thank you for all of your love! Our little family feels it so strongly... And with all that is transpiring we'll need your faith and prayers even more. A few days ago doctors shared with me tests results from my esophagogastroduodenoscopy. Doctors are theoretically concerned that there could be some excessive bleeding which may or may not be controllable during the transplant operation. It’s statistically serious because with each individual transplant surgery blood must be thinned with heparin for a lengthy time so patients don’t throw a clot and have a major stroke.

I have always believed someone greater than all of us runs the show. I’ve witnessed too many miraculous events to believe otherwise. I’ve also felt such comforting and peaceful emotions during hard times, which are unexplainable in words. I can’t deny feelings.

My friend and author Richard Paul Evans said of God, “If we looked at life as a ball game, God is not an umpire who sits and looks for failure. He’s more like the father in the stands cheering us on.”

Philosopher and spiritual leader Neal A. Maxwell wrote, “God loves us and, loving us, has placed us here to cope with challenges which he will place before us. I'm not sure we can always understand the implications of his love, because his love will call us at times to do things we may wonder about, and we may be confronted with circumstances we would rather not face. I believe with all my heart that because God loves us there are some particularized challenges that he will deliver to each of us. He will customize the curriculum for each of us in order to teach us the things we most need to know. He will set before us in life what we need, not always what we like. And this will require us to accept with all our hearts--particularly your generation--the truth that there is divine design in each of our lives and that you have rendezvous to keep with destiny, individually and collectively.”

For me, God has been extremely generous, kind and loving. I am surrounded by such love and support from family, friends, and strangers whom I see as brothers and sisters. I ache for others without such love to feel that same strength and power. Doctors have the skills to heal the body. Friends and family have the power to heal my mind.

My God and your God has provided me with a wonderful medical team who He can inspire. They are schooled and prepared to work miracles. And through them, I know God can perform many wonderful things according to His will and the faith of those who believe in Him.

And so at this time I humbly ask each of you to please pray for my gifted and skilled medical team of doctors, surgeons, nurses, technicians, and more at Primary Children’s Medical Center.

“I am a witness of His miracles and his mercy. I put my future in his hands knowing he's made me all I am. I put my faith in him and truth begins to speak. His power is real and it moves me until I will not be still.”

Photos: Top: With Eden in the P.I.C.U. / Middle: Rockin in the P.I.C.U. / Bottom: Standing in front of the painting of George Veasy, M.D. my childhood doctor. / Very Bottom: And a video of me and Eden

Did you just say esophagogastroduodenoscopy?

If my toddler read this entry she would probably ask if I learned it watching “Sid the Science Kid.” Unfortunately, when it comes to medicine I learn from experience.

The twice-daily lovenox shots I shied away from almost 8 months ago are now as painless as brushing your teeth. Designers of the insulin just need to sharpen the needles to get through thickening scar tissue. And so it goes with lab work, tests, and now minor outpatient surgery.

Cardiologists Melanie Everitt and Angela Yetman have been concerned about possible esophageal varices, which are extremely dilated sub-mucosal veins in my lower esophagus. They are most often a consequence of portal hypertension, commonly due to cirrhosis; patients with esophageal varices have a strong tendency to develop bleeding. It would make an already difficult transplant recovery much more challenging.

And so this past Monday I underwent a minor outpatient procedure referred to as an upper gastrointestinal test or esophagogastroduodenoscopy. Can you believe that word? You would think Mary Poppins had made it up.

Nonetheless, Dr. Dan Jackson at Primary Children’s Medical Center in Salt Lake City, Utah performs these all of the time and pronounces the word perfectly.

I walked into the operating room, laid flat on the narrow table a top what I call a patient's Tempur-Pedic mattress. I enjoyed some brief conversation with a few of the surgical nurses while a gifted anesthesiologist put me to sleep. I probably didn't get to finish what I was saying. Nonetheless, it was not very important.

While subdued, Dr. Jackson inserted a tube down my throat into my stomach. He pushed a minature camera in a pill form through me. Fortunately, he found no major concerns. There are a few varices in the lower third of my esophagus but nothing that needed banding.

While subdued Dr. Everitt was kind enough to arrange the removal of my existing picc line and reinsert in the same vein a double lumen picc so I can begin receiving nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins this coming week. It is called total parenteral nutrition (TPN) and will help my body stay tuned up for major surgery.

Earlier that day my father Duane and wife Lynnette volunteered to keep me company. We’ve been through this before and so they came equipped with laptops and books to keep them busy.

I often feel sorry for the many parents who’ve come for the first time with nothing to do but pace the floor and watch Hanna Montana on the children’s hospital network television. Of course, I’m not sure what’s worse? Having surgery, or watching Zac & Cody on Disney channel and learning how suite their life is?

As of today, my sore throat is gone. But, at some point, I bit my lip and developed a few canker sores. No matter, I'm very pleased with the results and the procedure was practically painless.

Deseret News Article & Video

Musician awaiting heart transplant performs at Primary Children's telethon

By Carrie A. Moore
Photo by Jeffery D. Allred, Deseret News

Tuesday, June 2, 2009 11:24 p.m. MDT

Editor's note: This is the fourth story in an occasional series

Musician Paul Cardall doesn't get to the piano much anymore, but when he does, the music is straight from his heart, the tired one that needs to be replaced soon.

Two small cameo appearances last weekend during the 27th annual KSL/Primary Children's Medical Center telethon provided him a chance to give back to a hospital he's frequented so often, there's a bronze wall plaque outside the electrocardiogram lab bearing his name.

It was placed there years ago by family members, whose donation to the hospital came after he survived a Fontan surgery to treat severe congenital heart disease.

At 36, he regularly visits his doctors in the cardiology clinic at Primary Children's, despite the fact that almost all of his fellow patients are 18 or younger. Continue reading the story

A Father's Message

When I get the call for a heart my wife Lynnette or Dad will blog updates and share insights. But for now, I asked my Dad to recall his memory of my first heart surgery and contribute to my blog. I should note that although Dad is a professional journalist for the last three decades this is a personal message. In his career he's been fortunate to interview great men and women.

The top photo is with my three older sisters at Dad's broadcasting studio. The bottom photo is in the Garden of Gethsemane with former LDS church President Spencer W. Kimball at Jerusalem in 1977.

If you want to be inspired by a classic documentary watch one of the first features my Dad did in the late 70s early 80s called The Marathon. Thirty years later he still has people commenting that his story motivated them to get in shape and run. I posted it at http://youtube.com/livingforeden

Dad is one of my best friends. I'm blessed to have him when so many don't have that in their lives. And I'm thankful he would take the time to share his memory.

Dear Paul,

I’ve been thinking a lot lately about your remarkable, even miraculous life, especially since your 36th birthday a few weeks ago. Well do I remember that spring day in 1973 when mom went into labor and we rushed to the hospital for your birth. The late night delivery at LDS Hospital, which I was able to observe, was routine, and I was thrilled to have a son, after having three daughters come into our home.

Our lives changed dramatically a few hours later, though, when I was awakened from a deep sleep at home by mom calling to let me know “there is a problem with the baby.” I made arrangements for your sisters and rushed to Primary Children’s Hospital, where you had been taken as a so-called “blue baby.” I met you, and a team of medical personnel led by Dr. George Veasy, coming off an elevator and en route to a medical procedure to determine your malady. Fortunately, I was able to get them to allow me a few minutes alone with you. Your Grandpa Layton and I were directed to a nearby closet where we found some privacy in order to give you, in accordance to our beliefs, a priesthood blessing. Then you were off.

It didn’t take Dr. Veasy long to learn that you had a severe congenital heart defect and that immediate surgery would be needed to keep you alive. You were rushed into surgery before you were a day old for what we were told was a shunt that would allow you to get enough oxygenated blood for your malformed heart to keep you alive.

It worked, and here you are 36 years later. It’s quite remarkable, really, when you consider that you weren’t expected to survive a year, let alone through childhood and beyond into puberty. Yet, you constantly defied the odds. And yes, here you are - a very productive, successful adult who has had a significant impact on countless people throughout the world. Moreover, you’re a loving husband and doting father.

I’ve thought about this in the context of the many CHD parents who follow your blog. Somehow, I hope they can find hope in your story, realizing, of course, that medical science is far more advanced than it was when you were born. Indeed, CHD, though serious, doesn’t always mean doom and gloom. There is always hope. Our hope was that you could be kept alive long enough for advances in medicine that would allow you to overcome your next crisis. It seemed such advances always came. And now we await the next step in your miraculous life. We still have great hope . . . as well as an abiding faith that all will be well. Surely, the miracle will continue.

Love you! Dad

Cath Today & Medical History Diagram

I'm heading into the hospital for a heart cath in a little bit and wanted to post this picture by Jeffrey D. Allred/Deseret News ©2009.

His photo completely captures our little family at Primary Children Medical Center. Eden is in the back showing my wife Lynnette a toy she loves. This is the 1st floor waiting room for labs on the southside.

Also, I've posted a diagram at the bottom of this blog showing hand drawn images of my heart when I was born and the progression of it's anatomy up to this day. It's fascinating to learn the function of the heart. What a magnificent creation!

Thanks again for everyone's continued support. We feel the power of your prayers and love.

Living for Eden Concert | Thank you!!

Pictures from one of the audience members Regina Fee see more of her photos from the show

Words cannot adequately express our sincere appreciation to all of you for joining with us to celebrate life and living for Eden. Our family experienced a feeling of love that we will cherish for a very long time. You are wonderful and we will never forget your kindness, love, and support.

We are optimistic about my future! My doctors at Primary Children’s Medical Center Angela Yetman, Melanie Everitt, their staff and surgeons are gifted and skilled professionals whose wisdom is blessing our community, particularly those who are born with congenital heart disease. And whether things go as we hope or not – one thing I do know is that every day we have to enjoy this life should be celebrated. It is a gift from our Heavenly Father. And as the Louie Armstrong song goes, "It’s a beautiful world" and I look forward to each new day.

Finally, a special thank you to all of the musicians, production, ushers, volunteers, family, friends, and the two people who pulled their resources together to do this event. My good friend and former business partner Jeremy Baron of the Baron Music Group and my dear sister Carol Burgoyne who is not only one of my best friends but one of the most talented organizers I know.

Thank you everyone. We love you!

Paul (Lynnette & Eden)

P.S. Please say a prayer for Jack Thomas Trent whose going in tomorrow morning for his Fontan procedure at Primary Children's Medical Center. And pray for Dr. Peter Kouretas who will perform the delicate procedure.

The Fontan which I received was the old verson which has sustained my life for 22 years. The new Fontan will go much further and longer for kids like Jack.

P.S.S. Also baby boy Grant (HLHS) is going to have some surgery. Say a prayer for him. http://grantmeaheart.blogspot.com/

Life is a Great Gift

( Photos by Busath Photography. We went to Busath so I could give Eden a Daddy-Daughter picture to capture this moment in our lives. Busath does beautiful work. The one below is of our family. )

I have been richly blessed as I continue to wait for a heart. This journey has been nothing short of a miracle. Life is a great gift. And I look forward to each new day.

I want to thank all of you for your thoughts and prayers on behalf of my little family.

My new blog friends are wonderful! Thank you for sharing your lives with me. All your comments have given me great strength. Please forgive me if I am not able to respond.

I want to thank my angel of a wife Lynnette for everything. She doesn't have much time to herself these days. When she's not working as an RN in the IMC Newborn Intensive Care she is caring for our daughter. Lynnette has been the great blessing of my life. In dealing day to day with my health issues and my unforeseen future she is a saint. I married my best friend and ache to spend every waking moment with her. I adore her love, patience, loyalty, spirituality, humor, wisdom, and beauty. Our sweet little girl Eden continues to laugh, dances, and learns how much love we have for each other through ups and downs.

I want to thank my parents for setting me loose as a child and allowing my heart and lungs to strengthen whenever I had a heart surgery. God put me in their arms.

I have a lot of siblings on both sides. There are so many it would be a whole page to mention each one. Each is amazing and great examples to me. My daughter adores her cousins. Everyone has thrown their arms around us in this time and has been available to help at a winks notice. I love you guys!

My friends and those who I attend church with have been a wonderful blessing and I look forward to seeing their faces each Sunday and throughout the week for various reasons. I love being involved and helping where I can. Now that I’m on the other end of the service I deeply appreciate what they do.

And I want to thank the wonderful medical team at Primary Children’s Medical Center. I have been blessed over the years with great cardiologists, nurses, radiologists, etc., the list is too long to mention. I’ve enjoyed care from experts at Intermountain Medical Center, The University of Utah Hospital, Jordan Valley, and Primary Children’s Medical Center. Of these great folks I want to especially recognize Doctors “Uncle” George Veasy, Conrad Jensen, Donald Doty, John Hawkins, Dale Renlund, Abdallah Kfoury, Patrick Fisher, Larry Green, Michael Adjei Poku, Ed Clark, Charles King, Peter Kouretas, Aditya Kaza, Ronald Day, Robert Gray, Elizabeth Saarel, Susan Etheridge, Roger Freedman, Brian Crandall, John Doty, and the many others who’ve worked on my case.

I am blessed at this time to consult with adult congenital heart doctor Angela Yetman. She is a fighter and extremely optimistic. She is extremely intelligent and my wife and I greatly admire her.

I have a wonderful transplant cardiologist Melanie Everitt and her team; Michelle, Emily, and others. They are always upbeat and I look forward to seeing them each visit. For those who’ve worked with Dr. Everitt I think they’ll agree with me that her sensitivity and caring nature is an absolute bonus to her wisdom.

Overall, thank you everyone! I love life. I am determined. You have all strengthened my conviction to carry on.

Say a Prayer this Valentine's for the Cardiac Kids

(Picture: 1st baby photo after I recovered from heart surgery at 22 hours - 1973)

In the past 6 months, since I was listed for a new heart, my wife and I have read other related blogs. It's sobering to see so many ‘cardiac kids’ or children with congenital heart disease. Some of these sweet souls have had transplants. Others are waiting. There have been miracles, struggles, and loss of life.

It’s inspiring to interact with a few of these families. I’m sure several share my medical team at Primary Children’s Medical Center in Salt Lake City, Utah. It’s a wonderful staff of experts who are passionate in their work to save lives. But, more importantly to me, the cardiology and transplant staff has a peaceful, caring spirit about them.

Although I am fully aware of the many adults in my same shoes I would hope they'd agree with me when I admit that living 35 years is a great blessing and an honor. I hope to have many more years. I have a daughter who needs a father. But, my heart is crying out for these ‘cardiac kids’ that they might have a chance to enjoy this beautiful world. Just as badly as I want to live for my daughter I want these sons or daughters to live for their parents.

Several months ago, while I was staying in the hospital with my health declining, I remember being discouraged with life and my situation. And although I struggled mentally, I said a quiet prayer. Moments later I recalled something I heard from a man I greatly admire. He said, “Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward. Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn… Hope has the power to fill our lives with happiness. Its absence—when this desire of our heart is delayed—can make ‘the heart sick.’” (President Dieter F. Uchtdorf, Member of the LDS Church First Presidency) Upon remembering this message I regained my optimism and felt peace again.

This Valentine’s weekend as we think of hearts I invite you to join with me in remembering these ‘cardiac kids’ and their families. Say a prayer for them. I’ve added links to many of their blogs over on the right side.

Primary Children's Medical Center

I am fortunate to receive all of my care from the good folks at Primary Children's Medical Center in Salt Lake City, Utah. I'm 35 but the oldest baby on the planet so they oblige. Actually, all of the experts and surgeons who specialize in my heart's anatomy and birth defect are there. I grew up going to this hospital when it was high up in the avenues up above the state capital and Mormon temple. Now, it is located on the University of Utah campus and next to the University Hospital where a lot of advances in medicine were developed.

Every time I go there I am deeply affected by the amount of ill children who I see. They are so helpless and hurting. Many are scared and some alone. I remember being there myself as a child and having the same emotions. But, there could not be a better place and staff to accommodate them and their families. These children bring a special feeling to the center. I believe angels walk the halls and provide a comforting spirit.


I'm also amazed at the advances in medicine since I was a child. When I went last week to have my picc replaced in radiology I saw a hallway with a sign that read "MRI". This was incredible because when I was 13 and dying with a staff infection in my heart we had to travel to LDS hospital in an ambulance to have an MRI. In fact, the MRI had only been there in Utah for 6 months. The full body scan would help doctors locate my staff infection and prepare surgeons which prolonged my life. Also, when I was there 2 months ago in the intensive care a nurse who I had not seen since I was 14 came to my bedside and we had a great discussion. There are many great folks who are still there and they remember the kids.

I'm very honored and feel greatly blessed to receive my care from the people at Primary Children's Hospital. As one of their patients I feel like a black sheep among some of God's purest sons and daughters. When you pray this week keep in mind the kids up there in that hospital even though we don't know their names, faces, or stories.

Back In The Hospital. . .

I've been in the hospital all week and this is the first time I've had a chance to write. I became so weak that they admitted me. Much of my care has been transferred to a children's hospital because most of the experts that have worked with me once a week through a clinic in another hospital could manage my care more closely because they're always here.

I am anxious to get home. On Monday I'm scheduled for a couple of minor procedures; a heart cath, possibly a stint to help get more blood to my lungs, and maybe a new pace-maker. Lucky me!

I'll try to write later and keep you posted! Thanks for all your thoughts and prayers.