Carson's Incredible Journey

By Janis Swart

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Our first child, Carson, was born to us in April of 2000. When he was 4 weeks old, we happen to be in Seattle when he stopped eating and increasingly became lethargic. We were recommended to a local hospital. They took a chest x-ray and immediately advised we quickly transfer to Seattle Children's.

There, we were diagnosed with Cardiomyopathy, for some unknown reason, Carson's heart was enlarged. After 10 days in PICU, and some follow up care, within months we were back to 'normal'.

Skip ahead 4 years. We noticed Carson breathing fast when sleeping. A chest x-ray was ordered, 'just to set our minds at ease'. Carson's heart was again enlarged and his lungs full of fluid.

Once again there we were at Seattle Children's. Thus began a year and a half of fighting for a healthy heart, resisting talk of transplant and trying everything we could to make him better.

When Carson turned 5, his little body began to show more signs of failing. Six months later, we were placed on the transplant list. We had waited almost too long. Two weeks after listing, we were admitted and moved to the top of the list. About 2 1/2 weeks after admit, we were placed on a ventilator to ease the work on his heart. About 4 days later, it was decided that we would be placed on ECMO.

The night before ECMO, we received a call that a heart had been found. The next morning surgery began to replace Carson's heart. By that afternoon Carson had a strong, healthy heart. We were so happy to be in a place we fought so hard not to go. His previously failing heart had taken it's toll on his body, so our recovery was long. We spent a total of 5 months at Children's.

Now Carson is a strong, healthy, mischievous boy. He is on a swim team and was recently the only one on his team to swim the entire length of the pool, 24 yards, without taking a breath. You would never know by looking at him what He has been through. He is incredible and so has been his journey to here.

What does Children's mean to you, your child and your family?

Children's Hospital means a variety of things to us:

It meant a place to park our 5th wheel so our family, including my husband, our then 3 year old daughter and 5 month old son, as well as my mother could be close to Carson.

It meant nurses and volunteers who would come and make our stay fun for our 3 year old and give her something to look forward to.

It was also a pool for her and I to spend some time together away from the hospital room.

It was a cafeteria that fed us all for 5 months.

It was clowns to make Carson smile and the singin' Chaplain to offer distraction.

It was nurses that offered so much more than just medical care.

It was concerned doctors who treated us like we were a part of what was happening.

It was being cared for by people who will forever remain close to our hearts.

It was kindness wherever we turned, smiles from the nice people who cleaned our rooms and Marv the milk man helping me with a heavy clothes basket.

It was and still is the incredibly gifted lab personel who just by seeing their familiar face can ease a child's fear of being poked.

It was the excitement of the snack lady coming by Carson's room each evening.

It was Santa coming to his room on Christmas day.

It was fun in the playroom and again with the kind volunteers that came to our room.

It was an incredible stay in Rehab, once again with wonderful people.

It was a physical therapist, who still is one of Carson's favorite people in the world, a transplant pharmacist, a social worker and chaplains that we still hug when we see them in the hall.

It was and still is an amazing group of people referred to as the Heart Center: an amazing cardiologist whose humor and obvious love for children give Carson and his siblings something to look forward to at our clinic appointments and a very talented heart surgeon, affectionately referred to by Carson as the doctor who put my new heart in.

Most of all it is a place we thank God for.