Wednesday, February 6, 2013

Meet our February 6th Heart Warrior Weston!!

❤Heart Awareness month❤ Meet our February 6th Heart Warrior: Weston. Son to Julie Keeton❤

Weston's story as told by his Mom: 

Weston is 6 and we have been waiting for 20 months in Philadelphia for a heart and double lung transplant. Here is his story....

God, blessed us with our second son, Weston. He is now 6 years old (born on September 3, 2006). He was born in the gorgeous mountains of East Tennessee. He loves those mountains (the dirt, the rocks, the bugs), but he doesn't live there anymore. He is currently inpatient at Children's Hospital of Philadelphia (CHOP) Cardiac Care Unit. He's been there since June of 2011 waiting a heart and double lung transplant. Right now, He, his youngest sister, and I have traveled to Philadelphia to stay for his medical care, leaving his Daddy and five brothers and sisters behind in Tennessee.

Shortly after his seemingly ordinary birth, Weston was diagnosed with aortic and mitral stenosis and an abnormal left ventricle. At 9 days of age, he was transferred from Tennessee to Duke University Medical Center, where he underwent a valvuloplasty. Two months after that, he had a repeat valvuloplasty. Afterward, we went home to Tennessee for a few glorious months, but had to return to Duke when Weston was 7 months old. He needed further surgical intervention. A few weeks after that, he returned to Duke again for a conduit replacement and a St. Jude Valve placement.

After all of that, we had three great, easy years back in our beautiful East Tennessee mountain home. Weston was able to remain at home with us in relatively good health until he was three years old. Then, he began to have episodes where he would turn blue and show seizure like activity. He would stiffen and many times, we thought he wasn't going to come back to us. This was a terrifying time for us. We brought him back to Duke, again. This time, however, we learned his condition was more involved that we previously knew. Weston was diagnosed with pulmonary hypertension. The physicians and experts determined that Weston would benefit from an in depth cardiac repair. We arrived at Duke to have his 3rd open heart surgery but after meeting Weston, Dr. Lodge said he had prayed about it and could not perform the surgery. God had intervened. He explained that Weston needed a much more extensive repair than he felt comfortable doing so the search was on for a new surgeon. While Weston was turned away at many top hospitals, Dr. Spray at CHOP indicated that he was willing to attempt the complex repair, so Weston was transferred to CHOP. The odds were not in Weston's favor but he underwent a complex open heart surgery in August of 2010 and had a fast recovery and celebrated his 4th birthday at CHOP.

We all hoped so hard that the open heart surgery would resolve the pulmonary hypertension. That this would be the end to all of his heart's struggles and he could return to the life of a rambunctious little boy who loves to run barefoot in the grass, play in the mud, and help his dad around the house. Unfortunately, it did not. Weston continued to have episodes of pulmonary hypertensive crisis. After ten more months of continued terrifying episodes and what felt like tons of unanswered questions, we YouTubed Weston's episodes and sent them to every doctor we knew along with Dr. Hanna at CHOP. He told us to come immediately because he could tell that Weston was in crisis. Upon arrival in June 2010, Weston developed endocarditis. After having a few episodes on the floor, he was transferred to the cardiac intensive care until and immediately listed for a heart and double lung transplant.

We entered the world of indefinite waiting. We had no idea when we left our home in Tennessee that day that it would be the last night that Weston would be spending there for a very long time. We had just found out the week before we came that we were expecting number 7. She is our Philly baby because she was born and has spent the first year of her life here. While the outcomes for heart and lung transplants in children are rare and outcomes are fair at best, the transplant is the only way for Weston to survive. He was able to leave the hospital in November of 2011 (yes almost 18 months later and 2 more birthdays later!). Thankfully, he is thriving outside of the hospital walls and we are praying for a Miracle or his Gift of Life. God has big plans for our little boy-bigger than Adam and I could have ever realized 6 years ago when he was born.

God has blessed Adam and me with 7 amazing children, 7 years old and younger. However, our family has been broken apart by Weston's illness. I am the primary caregiver for Weston. That means that I live in Philadelphia with our now 1 year old daughter and Weston. We try to rotate the other kids up so that we can spend time together and bring the kids all up so they can have time together. Adam had to return to work in Tennessee in order to keep our medical insurance and try to keep up our everyday bills. Our family members care for the other children while Adam is at work and he spends time with the kids on the weekends. Our wonderful, large family has gone from all living in one house, to being spread apart in 3 different households in two separate states.

Despite everything that Weston has endured in his six short years, he has the best attitude. You can't spend time around him and not come away utterly blessed. His doctors and nurses love him. New staff are always surprised at his tenacity and spunk! His days in the hospital are quite busy. He goes to physical therapy, occupational therapy, speech therapy, school, music, and art! He enjoys all of the things that young boys like -- Superman, Spiderman, Stars Wars, and Batman. He loves playing tricks on his nurses and doctors.

We are overwhelmed with the love and support for Weston and our family. We appreciate it and know that God is blessing us along the way with such wonderful friends and family. Please follow his page on facebook "Praying for Weston" or atwww.cotaforwestonk.com or see his video athttp://vimeo.com/54067010

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