Praying for Weston Keeton

With the cost of a transplant often exceeding $500,000, many transplant families are unable to shoulder the financial burden of such a procedure.  The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients.  In the Tri-Cities, volunteers are raising funds for transplant patients like local boy, Weston Keeton.  

 

God, blessed us with our second son, Weston. He is now 6 years old. 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. 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.
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. There he underwent a
complex open heart surgery in August of 2010.

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, in June of 2011, we
left Tennessee. We returned to CHOP. Weston was 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.

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.

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 infant 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.
His favorite activity is going outside. Unfortunately, due to his
condition, that is very limited. He has been outside in the sunshine
a mere handful in the 15 months he's lived at CHOP, due to his medical
needs. For a little guy who spent the majority of his time outdoors
before being hospitalized, this has been quite a trial.

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.

Even after Weston receives the transplants he so desperately needs, we
will have an extended stay in Pennsylvania. Tennessee and our family
reunited will still be many months away. After his transplant, Weston
and I will continue to live in Philadelphia for at least 4-6 months,
for follow-up care

For more information about Weston, join his Facebook group Praying for Weston