Born: February 23, 2002
Illness: Chronic Kidney Failure, Eosinophilic Esophagitis
Quilt Deadline: July 1, 2010
Theme of Quilt: Quilt is now full and closed. Please check the other children for stitching information.
The following interests are mainly to help you get to know the children better.
You may use what you can towards the theme of the quilt, but make sure that you stitch within the theme.
Tyler T's interests are: blue, he likes animals but especially horses, planes and legos. Tyler lives in MD.
Click here to see the squares for Tyler as they come in for him (Please keep in mind that his quilt was not opened to stitchers until February 2010)
Tyler was born on Saturday, February 23, 2002 and was a big 9 lb 4.9 oz baby boy. Tyler had many difficulties immediately after birth and was kept in the nursery for approximately the first 8 hours of his life under an oxygen tent. His little hand looked like a boxing glove from the IV. It was 5 days later and lots of tests scheduled and unknowns to face when our little family was finally able to go HOME!
Tyler was almost 3 weeks when it was determined that his bladder was blocked. Friday, March 8, 2003, Tyler had emergency surgery to place a vesicostomy (an incision through the skin line where the bladder was sewn open allowing it to drain into his diaper). Doctors said, Tyler's "plumbing" was too small to reach the blocked area so we had to wait until he was about 1 to remove the blockage. That would not be the case.
Over his first year of life Tyler grew like a chubby baby boy with several hospitalizations for infections. At 6 months, after many tests and "pooping" problems we found Tyler has a stenosous that had to be stretched so that he could eat and "poop" normally.
April 2003, we were transferred to NAS Willow Grove and to the care of the doctors at CHOP. They felt too uneasy to remove the blockage since Tyler's left kidney had already failed and his right functioned less than 50%. At age 2, he was diagnosed with a GI disorder called Eosinophilic Eosphagitis, in layman terms a severe form of food allergies. He was allergic to basically all food and he has since been supported and maintained by an elemental formula thru a G-tube.
In November 2006, we returned home to MD and back to the care of the doctors at Children's in DC. In February 2007, Tyler's bladder was repaired and vesicostomy closed. May thru September we frequented Children's with kidney infections causing us to proceed with bladder augmentation and a ureter reimplant and just recently his Mitrofanoff.
Today, Tyler has 22% function in his chronically failing kidney. Colds and infections cause his body to dehyrdrate and require hospitalization. He must cath in order to drain his bladder and relies on an elemental formula (Neocate Jr.) through a g-tube for his nutrition.
Update:
Tyler had a kidney transplant on January 19, 2010 from a non-relative donor. Tyler will be on a mild isolation for the next 3 - 6 months. He can not be around large crowds of people and definitely not anyone who has recently been sick. No more school this year due to the immunosuppression.
