Tonight I get to introduce you to Jayden ~ a super precious miracle!! And once you read more into his story you will see why. Jayden is a 19 month old little boy who actually doesn't live incredibly far from me...a days trip and receives his more complex care at the University of Virginia which is a little under an hour from my house!
Jayden was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. This is a very complex congenital heart defect that require extensive surgery and typically is accompanied with other complications as well. Jayden only has one functioning kidney, is blind in one eye, has scoliosis, and hypothyroidism. He is also vent dependent due to the chronic lung disease.
Now ~ when you read the part about being vent dependent...don't automatically think he doesn't have any fun! Because you can take one look on his Facebook page and see otherwise, but I will quote this from mom as well.
Jayden was diagnosed with Tetralogy of Fallot with Pulmonary Atresia. This is a very complex congenital heart defect that require extensive surgery and typically is accompanied with other complications as well. Jayden only has one functioning kidney, is blind in one eye, has scoliosis, and hypothyroidism. He is also vent dependent due to the chronic lung disease.
Now ~ when you read the part about being vent dependent...don't automatically think he doesn't have any fun! Because you can take one look on his Facebook page and see otherwise, but I will quote this from mom as well.
The most frightening moment so far has been when we first returned to the hospital in Roanoke and we believe the ride stressed him out and he fought for his life for about 24 hours. Once he adjusted, he was ok. The most exciting moments have been watching Jayden do things that doctors said he would not do, like breathe on his own without the vent, learning to be mobile and scoot around and also learning to talk over his trach. I was told that because he was trached and on a vent, we would not able to hear him talk or cry. HE does all that and more!
On his Facebook page there is a super cute video of him RIDING around the room on his 4-wheeler!! Now having worked in the medical field and doing patient transports, especially the little ones on ventilators. I never would have thought I would see that! Most of the children we transported were just there...for lack of a better description. Mr. Jayden though is showing all of us how to really make life worth it!!
Jayden has heart surgery coming up in less than a week now on January 3rd!! He will have a couple other surgeries down the road to repair a hernia and when he is older to correct his scoliosis, but this surgery next week is A BIG ONE!! Keep this little guy in your prayers, and his family as well!
Jayden has heart surgery coming up in less than a week now on January 3rd!! He will have a couple other surgeries down the road to repair a hernia and when he is older to correct his scoliosis, but this surgery next week is A BIG ONE!! Keep this little guy in your prayers, and his family as well!
To Follow and Support Jayden you can visit the following Facebook Page:
www.facebook.com/prayformyjay
I found these really great sites (both children's hospitals) about TOF and Pulmonary Atresia:
http://www.chop.edu/service/cardiac-center/heart-conditions/pulmonary-atresia.html http://www.childrenshospital.org/az/Site515/mainpageS515P0.html
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