Who is Patrick?

“It would take a miracle, you say? Well, if it takes a miracle, why not?”     – Boyd K. Packer

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Patrick is full of life. He’s energetic, friendly, and quite honestly, very hard to keep up with. He is always moving. He rides his bike and scooter, pulls his wagon, drives his “jeep” or just plain runs around the neighborhood. He has a friendly “hi” for everyone and makes new friends whereever he goes. He loves cars, books, and Netflix. He can name every major car make by logo. He is fascinated with learning to read.

But while on the outside, Patrick looks like a healthy and happy boy, his scars tells a different story.

Patrick was born missing most of his intestines. He’s waited almost 6 years before receiving a desperately needed liver-intestine transplant. Patrick was always far healthier than anyone would expect given the length of his illness. But it was this gift that gave him hope of a long and healthy life. On October 31, 2014, Patrick received a multivisceral (liver, intestine, pancreas) transplant at Nebraska Medicine, one of the best intestinal programs in the world.

Patrick’s Journey

IMG_0797 after extubationPatrick was born weighing just 5 and a half pounds with a condition called Short Gut or Short Bowel Syndrome. Because of a birth defect called gastroschisis, Patrick’s intestines didn’t develop properly. The defect allowed them to twist, cutting off their blood supply. As a result, most of Patrick’s intestines died before he was born. Patrick was left dependent on a form of intravenous feeding called Total Parenteral Nutrition, or TPN. Because he couldn’t absorb nutrients from food, everything he needed to grow was given to him through an IV. It’s a delicate balance and a challenge for an active little boy to be tied to IV pumps all day.

IMG_0842 sleepingPatrick’s doctors gave us a pretty dismal picture of what his life would be like when we adopted him. They said his liver would scar from the TPN and he’d live his life in and out of hospitals with life-threatening blood infections. They said it would be like living with an hourglass running out of an unknown amount of sand, never knowing how much time was left. They were right. But we quickly fell in love with the one-week-old baby boy with brown angel eyes and a full head of black hair. We knew he’d need help and love with his journey.

RLT-6311So we learned how to care for him and we brought him home to Utah. The doctors at Primary Children’s Hospital are wonderful, but because of Patrick’s Ultra Short Gut, he needs more help than they can offer. He needed an intestine. When he was 6 months old, Patrick traveled to Seattle Children’s Hospital where he was listed for an isolated small bowel transplant. He was listed Status 1.

And he waited and he waited.

Thought I'd spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Patrick waited for a transplant for almost 6 years. He’s continued growing bigger and stronger. He beat the odds every day. But, 6 years of Short Bowel Syndrome took their toll. He developed liver fibrosis. He was prone to infections that took him from healthy to critical in under an hour. His veins started scarring so that every new IV was difficult to place and the doctors worried that they soon will lose the ability to give him the TPN that kept him alive. And as his remaining intestine became more and more overworked and dilated, his belly became more and more sick. Patrick was sick to his stomach a good amount of the time.

20130212_114115In February 2013, knowing Patrick needed more help, we took him for one more transplant evaluation. This time, we traveled to the University of Nebraska Medical Center in Omaha. The news was a mix of good and bad. Patrick was far healthier than anyone would expect given the length of his illness. But, his intestine could adapt more than it had. His liver could not get better. He was running out of time. But they were confident they could help. They added his name to their transplant list and we went back to waiting and praying. We feared the worst, but tried our best to keep living life at its best, trusting that transplant would come when the time was right.

 

Patrick’s Gift of Life

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A family shot taken right before surgery

On Patrick’s 6th birthday, he was given the most amazing gift – the gift of life. Our phone rang just after we finished wrapping his last birthday present and were headed to bed. So instead of sleeping, we woke Patrick, packed our bags, said goodbye to our families, and headed to the airport. That was the longest flight of our lives.

Patrick’s opened birthday presents and trick or treated in the morning on October 31. Then went to surgery. His transplant was finished a little before midnight. The surgeon said things could not have gone more smoothly. Patrick, ever the fighter, was awake by the next day.

One day Patrick and I decided to go to the gift shop. He didn't want to take off his robe and because cold and flu season is in full swing, I made him wear a mask and gloves. We got a lot of caring smiles this outing.

Recovery from this kind of surgery is long and painful. The next weeks and months were some of the hardest of our lives. They were also some of the most miraculous. We celebrated the holidays in Nebraska as we watched Patrick’s new gut accept feeding. Within weeks, he completely weaned off of the TPN that had kept him alive for 6 years.

It wasn’t much longer before Patrick discovered eating. And that, with functioning intestines, he could enjoy it more than he’d ever experienced. Right now, Patrick doesn’t rely on tubes for his nutrition except when he is sick.

His recovery went so smoothly that we were able to return home to Utah just 4 months after transplant. Patrick was able to rejoin his kindergarten class for the last few weeks of the school year. He is now in first grade.

IMG_20150715_153321Patrick is loving his new freedom. He’s fiercely independent now. He loves playing with the boys in the neighborhood. He’s discovered he loves swimming.
His favorite foods are ham and mushroom pizza, corn dogs, hummus and crackers, doughnuts, and string cheese.

We are still navigating the world of special medical needs with food allergies, ADHD, brain injury and immune suppression. But we are doing it now with hope for a bright future ahead.

Above all, transplant gave us that gift. Hope. Patrick is making plans to be baptized when he turns 8, drive when he turns 16, and move away to college. Someday.


RLT_0223Even with very good medical insurance, Patrick’s transplant was very expensive for our family. We want to thank those of you who generously donated to help cover medical expenses, living expenses in Omaha during recovery as well as doctor’s visit co-pays, prescription co-pays, and the cost of travel back to Omaha. Because Patrick’s transplant expenses will be ongoing, as he requires medication and follow-up care for the rest of his life, we do still have an active fundraising campaign with the Children’s Organ Transplant Association.  

Click here for the donation page

 

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