Jayce's Healing Heart
Donation protected
Follow Jayce's journey here on his Facebook blog
Jayce was diagnosed with Congenitally Corrected Transposition of the Great Arteries (CCTGA) and a 3rd degree heart block while in utero. At 33 weeks pregnant after an amnio reduction procedure, Hailey, Jayce's mom, noticed that Jayce had reduced activity. By the time they got to the local hospital in Richland, WA to be checked, Jayce was in heart failure and doctors performed an emergency c-section. At 9:41 pm on March 30th 2018, Jayce was born. He was in very critical condition and was transported with his dad, Jered, by helicopter to Sacred Heart Children's Hospital in Spokane, WA, where they specialize in pediatric heart care. Hailey followed less than 24 hours later, as soon as medically possible after her c-section.
Jayce spent the first month of his life in Sacred Heart surviving many miraculous life saving procedures, some never before done. One of the doctors invented a special type of pacemaker out of several tools and instruments at his disposal because there was no out of the box option that would work to keep him alive. Jayce had many terrifying challenges and the things he and his medical team have overcome amaze all of us.
At 2 months old, Jayce had become strong enough to go home to Richland temporarily while he gained enough weight to be able to tolerate a more permanent pacemaker surgery. At 5 months old, they were back in Spokane (3 hours from home), to receive his pacemaker. The surgery was successful, although recovery was very difficult. After 4 days, with great relief, we saw his smile start to emerge and on day 10 post surgery they got to go home to continue healing.
For the next 10 months, Jayce continued to grow and thrive. He amazes everyone with his boundless energy and joy, even on days he doesn't feel well. Hailey says, "This kid doesn't let heart failure slow him down. He will go go go until his body literally won't allow anymore play." This sweet boy just wants to live life to the absolute fullest at every chance he gets.
In late July 2019, at 16 months old, he was in heart failure again and was life-flighted back to Sacred Heart in Spokane from Richland. They determined there that the only viable option is to pursue a transplant. After 12 days, he had successfully transitioned to oral medication that could be administered at home and the next step was to establish care and planning with Seattle Children's hospital, 4 hours away from their home. Within 10 days of being home, however, Jayce rapidly declined, and they were told to immediately go to Seattle. The transplant team at Seattle Children's have indicated Jayce will not be able to go home without a new heart. They expect that the wait could be at least a year or more, and they will remain in Seattle for the duration of that time including recovery post transplant.
The level of care that Jayce has required through out his life has meant that Hailey and Jered, and Jayce's siblings Kaia and Jaxson, have often had to travel far from home to seek the right level of care. Now that Jayce is in Seattle Children's long term, the family is temporarily relocating for the duration of his treatment. The cost of living in Seattle, and because they are so far from home has put a great deal of financial pressure on the family and we are fundraising to cover basic monthly expenses and necessities for the next 18 months.
We cannot thank you all enough for your generosity, your loving words of support and kindness, and for being such a light in our lives during our journey. We could not do this with out you and your support!
Jayce was diagnosed with Congenitally Corrected Transposition of the Great Arteries (CCTGA) and a 3rd degree heart block while in utero. At 33 weeks pregnant after an amnio reduction procedure, Hailey, Jayce's mom, noticed that Jayce had reduced activity. By the time they got to the local hospital in Richland, WA to be checked, Jayce was in heart failure and doctors performed an emergency c-section. At 9:41 pm on March 30th 2018, Jayce was born. He was in very critical condition and was transported with his dad, Jered, by helicopter to Sacred Heart Children's Hospital in Spokane, WA, where they specialize in pediatric heart care. Hailey followed less than 24 hours later, as soon as medically possible after her c-section.
Jayce spent the first month of his life in Sacred Heart surviving many miraculous life saving procedures, some never before done. One of the doctors invented a special type of pacemaker out of several tools and instruments at his disposal because there was no out of the box option that would work to keep him alive. Jayce had many terrifying challenges and the things he and his medical team have overcome amaze all of us.
At 2 months old, Jayce had become strong enough to go home to Richland temporarily while he gained enough weight to be able to tolerate a more permanent pacemaker surgery. At 5 months old, they were back in Spokane (3 hours from home), to receive his pacemaker. The surgery was successful, although recovery was very difficult. After 4 days, with great relief, we saw his smile start to emerge and on day 10 post surgery they got to go home to continue healing.
For the next 10 months, Jayce continued to grow and thrive. He amazes everyone with his boundless energy and joy, even on days he doesn't feel well. Hailey says, "This kid doesn't let heart failure slow him down. He will go go go until his body literally won't allow anymore play." This sweet boy just wants to live life to the absolute fullest at every chance he gets.
In late July 2019, at 16 months old, he was in heart failure again and was life-flighted back to Sacred Heart in Spokane from Richland. They determined there that the only viable option is to pursue a transplant. After 12 days, he had successfully transitioned to oral medication that could be administered at home and the next step was to establish care and planning with Seattle Children's hospital, 4 hours away from their home. Within 10 days of being home, however, Jayce rapidly declined, and they were told to immediately go to Seattle. The transplant team at Seattle Children's have indicated Jayce will not be able to go home without a new heart. They expect that the wait could be at least a year or more, and they will remain in Seattle for the duration of that time including recovery post transplant.
The level of care that Jayce has required through out his life has meant that Hailey and Jered, and Jayce's siblings Kaia and Jaxson, have often had to travel far from home to seek the right level of care. Now that Jayce is in Seattle Children's long term, the family is temporarily relocating for the duration of his treatment. The cost of living in Seattle, and because they are so far from home has put a great deal of financial pressure on the family and we are fundraising to cover basic monthly expenses and necessities for the next 18 months.
We cannot thank you all enough for your generosity, your loving words of support and kindness, and for being such a light in our lives during our journey. We could not do this with out you and your support!
Fundraising team (3)
Jess Grandinetti
Organizer
Seattle, WA
Hailey Smith
Beneficiary
Sally Joan Jones
Team member
Zack Smith
Team member