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.

Remembering a Girl named Stephanie

There is not a week that goes by that I don’t remember a little girl named Stephanie who had a profound effect on my attitude and outlook on life.

I was a teenager and received the challenging Fontan procedure, which would greatly improve my heart’s function. Surgeons re-opened my chest a few days later to reduce swelling, bleeding, and implant a pacemaker. I was in good spirits until they said they had to go back in and replace the faulty pacemaker and move it to my abdomen. By then I was depressed and frustrated with my situation. I remember saying to my dad with tears in my eyes, as I was wheeled on an operating table into that final surgery, “I want to go home.” But, what I meant was home to God. “I can’t take this anymore.”

I had been in the pediatric intensive care unit a few days sleeping mostly as my body recovered. There was one particular day when I awoke and saw standing next to the side of my bed a young girl I thought to be 5 or 6 years old. She had dark hair, big beautiful eyes, and was obviously mesmerized at my situation. I must have had a hundred tubes running in and out of me and I still had a large one down my throat, which was uncomfortable. But, here was this young girl who was very pale. I noticed a tube placed into her trachea on her neck. She could not speak and sadly she appeared to be dying. And yet, this little girl had a smile that stretched from one ear to the other as if to say, “Cheer up… It’ll be ok!”

Over the next few days we became friends. Stephanie would stop by to visit me in the PICU and eventually in my room on 4 West. She drew me a picture of her in green scrubs standing tall in a bed of colorful flowers by a tree with the sun shining down. I would show her all of my BYU football posters of Shawn Knight and Jason Buck along with an autographed picture of Bruce Hurst who pitched for the Boston Red Sox. He graciously stopped by to see several patients the previous year while I was having heart surgery to remove the walnut size blister full of staff infection or called endocarditis. (His pitching helped the Rex Sox defeat the New York Mets in the 1986 world series.)

Eventually, I recovered and went home. A year later my family ran into Stephanie’s mother Patsy at a grocery store where she told us that her daughter passed away shortly after we left the hospital. She had a form of sistic fibrosis, which slowly took her home to God. Patsy told us Stephanie loved coming down a floor to see patients but it wore her out and eventually she died.

Many years later as I was preparing to leave my home for a two-year service mission for my church this experience would replay over and over in my mind. I spent three weeks in a training center under a very strict schedule. We were up at 6:30 every morning, attended 12 hours of class, and hit the sack at 10:30 pm. This began to wear on my health and I was frustrated and became depressed. I thought about being sent home. I didn’t want to be a burden.

My mind reflected back to my challenges in a hospital where I underwent worse challenges and I thought of Stephanie. And for the first time I realized the depth of her sacrifice in visiting me. She died giving of herself to others. She probably could have lasted a little longer. But, rather, she got out and went to the aid of another. Whether that was her intention or not she did it anyways. Her visits and radiating smile transfixed me in the hospital and I was no longer depressed.

And in that missionary training center, after being depressed and throwing a pity party for myself I chose to “cheer up” and told myself Stephanie’s words, “It’ll be ok.” My mission became another one of the most important experiences of my life wherein I learned many of life’s valuable lessons.

There is not a week that goes by that I don’t think about Stephanie.

(Pictures: Top Right - Me and Stephanie; Right Middle - My companion Elder Clark and me; Bottom Right - With one of my favorite families)

Getting Out!

I was finally able to get out and do something other than travel to a hospital which felt really good. I went and voted early and then hit the drive through of "Crown Burger" with a friend. In addition, I went with my wife and daughter to my sister's home so Eden could trick or treat with her cousins. For a little girl who is always wearing princess dress ups she wanted to go as a spider. It was cute.

I saw my cardiologist Angela Yetman today and things looked stable. I'm giving myself lovanox shots twice a day to help me absorb protein.

I'm wearing oxygen 24/7 at 3 liters and I carry around the milrinone medication pumping into my arm through my picc line (there are 2 pictures to the right of the picc).

It is difficult to shower. But, I am grateful that these things are giving me more time while we wait for my heart.

Incidentally, I was moved up on the list to a status 1B. What does that mean? You're either a status 7, status 2, status 1B, or status 1A (I guess because they can't count from 1 to 4). To my understanding, and I might be wrong, a 7 is a person who has a hard time qualifying for a heart because of other disease, infection, weight, and more. A 2 is a person who needs a heart but they're at home and able to go to work or they are somewhat stable at home. A 1-B is in and out of the hospital, receiving medication through a picc full time, and other difficult issues. The 1-A's are in the hospital and don't have vey long. So, it certainly is an unusual situation because there are plenty of people who need a transplant of some kind. There is a great web-site with data about the list and those waiting or donating. CLICK HERE

Heart Cath & Stent Done

I'm home after Monday's heart cath where they also put a stent in the right pulmonary artery. I feel much better. They were not however able to upgrade the use of my pacemaker. Oh Well. I'm home!!! I'm still a little tired and in bed most of the day but I am with Eden & Lynnette.