As October is Liver Awareness Month, A COTA Household is Celebrating Their Toddler’s Now Healthy Liver and Their Donor Household’s Selfless Decision – The Released Press reporter

1October 2020

Teagan Danielle Jones
On December 12, 2017, Elizabeth Puglisi and Zach Jones of Daytona Beach, Florida, were told their infant girl, Teagan Danielle Jones, had a life-threatening

illness called Biliary Atresia (Bachelor’s Degree ), which is an uncommon liver illness affecting one in every 10,000 to 15,000 children. DAYTONA BEACH, FL– October is Liver Awareness Month, which is the month promoted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans suffer with some kind of liver illness. This October a Florida transplant household is enjoyed be celebrating their child’s now healthy liver and her 2nd chance at life.

Elizabeth Puglisi and Zach Jones of Daytona Beach, Florida, were excited to find out they were pregnant with their very first child. Elizabeth keeps in mind the day their little girl entered this world and quickly stole their hearts, Teagan Danielle was born bright and early in the morning in mid-September 2017. Looking a bit jaundiced, she was covered like a radiance worm during her short, newborn healthcare facility stay. When the young household was sent home their lives quickly focused on Teagan’s schedule, that included consuming, sleeping and simply being an infant.

Life was sleep-deprived and chaotic during their very first few months in your home, however that seemed ‘normal’ to these novice moms and dads who very quickly had fallen deeply in love with their precious infant.

‘Normal’ took a really sharp turn in another instructions in late November during a see to a brand-new pediatrician (due to an insurance coverage modification) who ordered a series of tests, scans and treatments done on Teagan because of some unpleasant signs and symptoms. On December 12, 2017, Elizabeth and Zach were told their infant girl had a life-threatening illness called Biliary Atresia (Bachelor’s Degree), which is an uncommon liver illness affecting one in every 10,000 to 15,000 children. Children are born with this illness and medical professionals do not understand, as of yet, what triggers it to take place. A week after the startling diagnosis, Teagan went through the Kasai procedure, which is often a ‘surgical fix’ for Bachelor’s Degree children and a method to delay a liver transplant. Baby Teagan was released from the healthcare facility to spend her very first Christmas at home with Mommy, Daddy and their beloved pet dogs, Royce and Rari.

Kid’s Organ Transplant Association(COTA)Kid Teagan Jones, Liver Transplant Receiver According to Elizabeth, “We comprehended the Kasai procedure does not constantly lead to the preferred outcome and we knew full well that a liver transplant was a highly likely next step for Teagan.”Teagan was admitted to the healthcare facility on January 11, 2018, due to complications from fluid buildup in her abdominal area. This stay was 5 days in duration. Part of their challenge was never ever knowing when the next healthcare facility admission/stay would be needed to keep Teagan growing and getting weight in anticipation of a life-saving liver transplant.

In May 2018 Elizabeth, Zach and Teagan travelled to the AdventHealth Transplant Institute in Orlando, Florida. The superior pediatric group at the transplant center carried out numerous tests on the infant to attempt and get a sense of Teagan’s transplant timeline. A transplant social employee there suggested that Elizabeth and Zach reach out to the Kid’s Organ Transplant Association (COTA) for more information about fundraising for transplant-related expenditures. Granny Karen called COTA on May 14, 2018, and asked numerous excellent concerns about the methods COTA could possibly help. While Zach was still able to work, Elizabeth had to quit her job to care for their ill little girl. Granny Karen told the COTA Household Provider agent that Mother and Teagan were currently at the transplant center undergoing more tests, which is why she was reaching out on Elizabeth and Zach’s behalf for more information about COTA. Later on that exact same day the household returned the contract through COTA’s online portal, which meant Teagan was formally part of the COTA Household. COTA’s President Rick Lofgren called the couple on May 17thto look at Teagan and to see if they had any concerns about COTA’s assistance and support.

COTA uniquely understands that moms and dads who care for a child or young person before, during and after a life-saving transplant have enough to handle, so COTA’s model moves the duty for fundraising to a community group of skilled volunteers. COTA is a 501(c)3 charity so contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are offered for a life time of transplant-related expenditures. A COTA fundraising specialist skilled volunteers for the COTA for Team Teagan campaign and strolled them through the entire COTA fundraising process. This group of family members and good friends quickly got to work organizing fundraisers to help with transplant-related expenditures.

On May 29th, Teagan was formally listed on the UNOS (United Network for Organ Sharing) Active Liver Transplant List. Both Elizabeth and Zach took deep breaths and settled in for what they believed would be a lengthy wait for ‘the call’ telling them an ideal liver had been discovered for Teagan. Nevertheless, that call came simply a few weeks later on June 19 th— a match had been discovered for Teagan.

Elizabeth blogged on the COTA site on June 20th: Our prayers have been addressed in the most amazing method! Teagan is on her method to get her brand-new liver. She goes into surgery late tonight and we require your prayers and excellent vibes. Please likewise pray for the family members of the donor who are dealing with unimaginable heartache while we are rejoicing.

And on June 25th: In the turmoil, stress and anxiety and excitement of the last few days we understand we had not published an update here. Teagan’s surgery happened overnight on June 20thand into June 21st, which is her official transplant date. Fast forward 72 hours and our little warrior princess is actually making an exceptional recovery. She even is back to delighting in a special delivery of her favorite ‘Donnie’s Donuts’ blueberry donut!On June 29th, Elizabeth blogged: We enjoy to report that simply seven days post transplant, Teagan is recuperating in your home. Her medical group is astonished by her progress and her recovery. We could not have braved this storm without the love and prayers of household, good friends and total strangers who have lifted us in prayer. To those of you who have graciously contributed to COTA for Team Tegan THANKS! COTA funds help with transplant-related expenditures connected with the liver transplant stay and post-transplant expenditures, which will continue to intensify with twice-weekly return journeys to the transplant center and other out-of-pocket costs.

To their friends and family members wonder, the COTA for Team Teagan charity event set up on July 1st, which was a car show properly prepared at Donnie’s Donuts, had an unforeseen star appearance when Miss Teagan showed up to ‘wow’ the COTA Miracle Makers who were in presence.

Teagan had a medical setback in late August that needed a week-long PICU remain where she had the ability to get essential IV medications. Not even a healthcare facility stay could keep Teagan down. She was home and able to commemorate her very first birthday in a very big way in September.

Elizabeth updated the Team Teagan Facebook page with numerous stunning birthday images and this upgrade: Here we are on a day we were uncertain we would ever see … Teagan’s very first birthday!!! Her ‘Brave Youngster’ party was full of happiness and LOTS and lots and GREAT DEALS OF frosting– and Donnie’s Donuts.

While every transplant story is absolutely different, ours was distinct because of Teagan’s compressed ‘transplant timeline.’ We discovered the Kid’s Organ Transplant Association (COTA) at her very first transplant group visit, and she was listed for a brand-new liver simply 6 days later. Her life-saving transplant took place three weeks after that, and we were all home one week after transplant. COTA has been an extraordinary safeguard for us. We understand the reality of transplant consisting of the visits, medications and possible 2nd transplant that could be part of her future. The peace of mind COTA provides is genuinely vital and lasts … for a life time,” stated Elizabeth and Zach.

Three-year-old Young Child Teagan is doing well. She has just recently begun gymnastics lessons and is still a huge Disney World fan. She has regular medical professionals’ visits and takes numerous medications to keep her brand-new liver healthy. Her favorite thing to do is to play outside– all of the time. Her dependable stuffed buddy ‘Lambo’ is usually in her hands or a minimum of in her sightline. Lambo has been everywhere with Teagan since her diagnosis– consisting of in the transplant operating room while she got her brand-new liver. Elizabeth says Teagan’s post-transplant journey has been nothing however smiles and wondrous events.

“While we have been lucky to have very few bumps in the road along Teagan’s journey we understand anything is possible with a transplant. We stay confident that with Teagan’s positive attitude, goofiness and strength will bring her through life gracefully,” Elizabeth added. “That being stated, the fact that COTA’s assistance and assistance lasts a life time has been an extraordinary safeguard for us. COTA enables us to breathe easier because we are very conscious that an effective transplant is not completion of the journey … it is actually simply the beginning.”


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