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.

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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.

The Highest Peak of Our Lives

Utah weather is wacky. One day it is cool with rain and the next day dry and a hot 95 degrees. Even though I’m outside as much as I can, I feel a peaceful storm coming where I will get a transplant and experience a challenging recovery. I could get a phone call from my doctor at any moment saying, "Paul, we have a heart for you."

I have confidence in my surgeon’s ability to pull it off. I don’t doubt that. But, I fear the recovery. Will I be claustrophobic? I have felt uncomfortable in the past for simple procedures. Will I go crazy or feel extremely restless? I've experienced some of those feelings before in the hospital and this is my greatest fear. I'm not afraid of the surgery and the physical pain as much as the fear of having no control over my mind and body. I’m sure these questions and emotions are natural. Despite these insecurities, I am at peace knowing that the entire team is prepared.

I am also preparing my mind and soul. My daughter, wife, and whole family is on my mind. And now with the sudden death of my dear sweet friend and brother Brian I want to fight that much more. I want to live for these people who I love.

But, my brother Brian inspires me. He climbed the face of mountains and accomplished many great things. As my wife and I climb one of the grandest peaks of our lives I’m ready and comforted because I know he’ll be close by. Others won’t see, feel, or notice him. But, I know he’ll be there along with so many others pulling me up that steep mountain of recovery.

In the meantime, we’ve been spending more time together as a family doing a few fun things. I have some renewed energy, which I attribute to everyone’s prayers and good medicine. In fact, last night we ran for Ice Cream at Baskin' Robbins. My girl Eden always orders the clown, bites off all the decorations, and then offers to trade deserts with my wife. Eden will eat most of Lynnette’s ice cream and then want to swap back leaving her mother an empty cone. We laugh. Eden is a character.

My sweet girl has been asking about Brian. We went to the cemetery and she wanted to see what she terms his body as the “pretend” Brian. We told her that he’s not there and has gone to be with Jesus. Trying to explain death to a toddler is quite difficult. It was helpful that the day before Brian’s death Eden and I walked outside to find a dead robin. I said, “Look, it’s not moving.” She asked why? “Because he’s died. The life inside of him went to be with Jesus leaving his body behind.” I got a shovel and we dug a little hole in a section of our garden. I put the bird in the ground and we covered him with the earth. She said, “I want to see it again.” I said we couldn’t, at least not now, but possibly someday. I didn’t realize the profound impact of all of this dying talk until a couple evenings later. It was after Brian’s funeral, while Lynnette was working, Eden slept next to me. With some sadness and frustration on her face she said, “Dad, I don’t want you to go with Jesus.” I told her I would do my best but if I had to go be with Jesus, Brian and the bird would take good care me. She understood.

Clinic Update & Concert Story

My bi-monthly clinic concluded that my health is stable. Isn’t it nice to be told your clinically stable? I have more color in my face. I’m producing more red blood cells. (This could explain my leaning toward college blue BYU all of these years.) On Tuesday, I will undergo a heart cath or cardiac catheterization.



My fellow cardiac pal Grant
We continue to get feedback from the concert and are hearing wonderful stories about people who attended the show. My wife and I are still humbled by the outpouring of love and support!

This came from Kyle & Alli, the parents of my fellow cardiac pal Grant, who is recovering from some challenging surgery.

“Last night, we had another huge blessing. We have wanted to attend a benefit concert for Paul Cardall (an musician who has a similar heart defect to Grant and who is waiting for his heart transplant), but we were unsure of where life would take us and so we did not buy tickets.

Yesterday, after we decided we trusted our nurses for the day and we knew our night nurse, we decided we could attempt our first real outing away from the hospital! To our dismay, tickets were sold out. We started trying to find some tickets and just after posting and emailing a few people, someone came on the intercom here and announced that they had tickets for the concert that they were not using that they wanted to donate to a family here on the floor. What a fast answer to a simple hopeful prayer! We claimed the tickets and were able to go with a few friends last night.

What a wonderful concert it was. I had major anxiety leaving Grant for so long, but it was good to be there. We met many heart families who we had previously known only through the world of blogs and thoroughly enjoyed the entertainment. Paul was able to stand with his family and thank those in attendance for their support and it was wonderful to see him, though weak, still full of hope.

There was a beautiful tribute to Gracie Gledhill and recognition of the many other families with "cardiac kids" and the whole heart community was there to embrace another. We spoke with Tom and Michele Gledhill right before the concert and I was so glad for their family to continue to see little Gracie living on and touching lives just as each of these sweet angel babies do to all who know them and their lives.

I loved being there, but I was glad to be back with my sweet baby.” - grantmeaheart.blogspot.com

There are a lot of cardiac kids who are in need of help and there are mother's with empty arms who need our prayers. And when you retire this evening remember them and don't forget to say one for Grant and his family.

In the News!

(Picture: Family photo taken Summer 2008 by BUSATH)

My good friends at Intermountain Donor Services in Salt Lake City have been asking me to share my story with our community through the media. It took me awhile before I said yes. But, I changed my mind because of the number of parents I’ve observed with children who have congenital heart disease (CHD).

My parents have never given up on me and I now have my own family. Even to this day they stay positive and it motivates me. It’s inspiring. It doesn’t mean we haven’t had our share of tears and frustrations. But, they’ve kept an optimistic attitude about life. They keep hope alive. A man I greatly admire, Dieter F. Uchtdorf, stated, “each time a hope is fulfilled, it creates confidence and leads to greater hope.”

Again, and I’ve said this many times, I’ve been extremely blessed to live almost 36 years after doctors’ thought as a child that I would not make it. If there is one thing I’ve learned it is that we are not in charge. There is a finale' for each of us. Those around us are subject to that. But, until then we all do our best to fight to survive either for ourselves or for our children. It’s mind over matter. I have no doubt that there is something greater than all of this guiding our lives, the lives of our children, and the world in which we experience life.

Another old hero of mine said, and I now understand the humor of what he meant, “You go to bed each night and hope you wake up in the morning.”

So, I hope in sharing my story it might help your life in some way. We are all trying to find “joy” in the journey. These experiences allow each of us to understand the full measure of that word “joy”. But, joy does not come into our hearts until we have experienced a lot of pain, heartache, and tears. C.S. Lewis said, "It's impossible to know happiness until you suffered great pain."

THE DESERET NEWS
A song of the heart is a daily ritual
By Carrie A. Moore

First in an occasional series.

Paul Cardall makes music, the kind his fans say soothes the heart and nurtures the soul. And though he may not know it, his feel for and expression of that music may have literally helped keep his tired heart beating until he receives a new one in the near future.

At age 35, Cardall's award-winning career as a musician — with more than a dozen CDs and numerous public performances under his belt — has taken a sabbatical since August, when he was listed for a heart transplant after a lifelong series of surgeries, medications and therapy. Those who know of his challenge follow his blog to read the latest updates on his condition.

Continue the article

KSL TV
Musician to undergo heart transplant at children's hospital
By Ed Yeates

Video Courtesy of KSL.com

Getting Out / 100g Protein / P.V.C.

Yesterday at clinic my transplant cardiologist Melanie Everitt said my lab work looked good. I have more color in my face because I am no longer anemic. I am also feeling better than I have been, given our circumstances.

I was able to take my family on a few outings this past week, which we haven’t done in a long time.

Here’s a few pictures:
We visited down-town Salt Lake City and saw some historical sites; i.e. Mormon Tabernacle; we also had some good friends take us to dinner for big juicy protein steaks. I am eating like 100 grams of protein each day.

This is all good news! I need to be strong for the transplant operation. It will help in the recovery.

I am fortunate to have wonderful doctors and nurses. I feel a great connection with each one of them and I trust their judgment.

But, again, every time I go into the children hospital to receive care I see kids in hard circumstances. But, I'm at peace knowing a few of the people who are providing their medical care.

We did learn that my heart is having premature ventricular contraction (PVC), also known as ventricular premature beat (VPB) or extrasystole, is a form of irregular heartbeats in which the ventricle contracts prematurely. This may be perceived as a "skipped beat" or as palpitations. So for the past 24 hours my heart has been monitored to see how often I have them.

Possible triggers of PVC – I commented on each of these.

* Anxiety/Stress (I have some of this)
* Chocolate (I do eat a lot of this)
* Caffeine (Coca-Cola, yes)
* Cocaine or other stimulant (No)
* Calcium/magnesium imbalance (Yes, I have this)
* Dehydration (sometimes)
* Exercise (I don’t do this)
* Hormonal imbalance (Nope)
* Hypercapnia (CO2 poisoning) (I have no idea)
* Hyperstimulation of the Vagus nerve (Not sure)
* Lack of sleep/exhaustion (Yes, this is true)
* Overeating (A little bit)
* Low copper (I don’t eat pennies)
* MSG (I think this is in a bunch of the food I eat)