Team Adelyn Joy
Donation protected
Since her birth in October 2017, sweet Adelyn has been through more than any one person should ever have to endure.
At only eight weeks, Addie had her first open heart surgery to repair her partial atrioventricular septal defect, or ASVD (a term for a group of rare heart defects that are present at birth (congenital).
Over the next 8 months, Addie underwent four additional open heart surgeries, as well as many other complications. These included two mechanical valve replacements, and the removal of an appendage on top of heart. After clotting two valves and ending up on ECMO (a heart-lung bypass machine) Addie finally got a Melody valve in July 2018. This valve is unique to Addie in that it is typically a pulmonary valve, but our girl has it being used as a mitral valve (because she's special :)) In addition to open heart surgeries, Addie had issues with aspiration and pneumonia and had a G-tube placed for tube feeding (she eats like a champ now!). She has had countless visits to her specialists at Lurie Children’s over the last two years.
When Addie got her Melody valve, the hope was that this valve would last her 3-5 years. Unfortunately two years after it’s placement, Addie began to show signs that it was failing sooner than expected. After issues with worsening pulmonary hypertension and increasing BNP (indicative of heart failure) she was admitted back at Lurie’s in September.
Over this past month, the plans for Addie have changed several times. From initially a plan for a new mechanical valve, then an attempt to stretch her valve, and ultimately ending with a plan for highly invasive open heart procedure called a Berlin heart (VAD). This procedure will be Addie’s sixth open heart surgery. The hope is that this procedure will allow her pressures to come down enough that Addie will qualify for a heart transplant. She cannot leave the hospital while she is attached to the VAD (performed October 9, 2020). After 6 weeks on the VAD, they will re-check pressures and hope that our girl qualifies to be listed for a heart. And then we wait. She will likely be in the hospital for many months, as the average wait for a heart for someone her age is 3-6 months (once she can be listed).
**The VAD surgery did improve her pressures after 4 weeks. Addie was listed for a heart transplant on November 3rd. As of February 6th, she is still waiting ♥️
**After 321 days on the heart transplant list, Addie got a heart on September 20,2021. After a little over a month in the hospital she was able to come home on October 22nd. She continues to live her best life at home with mom, dad and her sisters.
---That’s where you come in. Though Addie is home now, the costs of her care are still high. The cost of gas and parking at the hospital for multiple appointments, as well as the cost of medications and supplies add up quickly. The biggest costs, however will be the never ending medical bills for all of Addie’s care. Allen and Becky have two older girls at home (5 and 7) and are trying to keep life as normal as possible for them as the navigate this new life with Addie at home. Any stress on them that can be alleviated by covering some of these costs would be greatly appreciated. If you're not able to donate, any prayers would also be appreciated!
Thank you for loving our girl! ♥️
At only eight weeks, Addie had her first open heart surgery to repair her partial atrioventricular septal defect, or ASVD (a term for a group of rare heart defects that are present at birth (congenital).
Over the next 8 months, Addie underwent four additional open heart surgeries, as well as many other complications. These included two mechanical valve replacements, and the removal of an appendage on top of heart. After clotting two valves and ending up on ECMO (a heart-lung bypass machine) Addie finally got a Melody valve in July 2018. This valve is unique to Addie in that it is typically a pulmonary valve, but our girl has it being used as a mitral valve (because she's special :)) In addition to open heart surgeries, Addie had issues with aspiration and pneumonia and had a G-tube placed for tube feeding (she eats like a champ now!). She has had countless visits to her specialists at Lurie Children’s over the last two years.
When Addie got her Melody valve, the hope was that this valve would last her 3-5 years. Unfortunately two years after it’s placement, Addie began to show signs that it was failing sooner than expected. After issues with worsening pulmonary hypertension and increasing BNP (indicative of heart failure) she was admitted back at Lurie’s in September.
Over this past month, the plans for Addie have changed several times. From initially a plan for a new mechanical valve, then an attempt to stretch her valve, and ultimately ending with a plan for highly invasive open heart procedure called a Berlin heart (VAD). This procedure will be Addie’s sixth open heart surgery. The hope is that this procedure will allow her pressures to come down enough that Addie will qualify for a heart transplant. She cannot leave the hospital while she is attached to the VAD (performed October 9, 2020). After 6 weeks on the VAD, they will re-check pressures and hope that our girl qualifies to be listed for a heart. And then we wait. She will likely be in the hospital for many months, as the average wait for a heart for someone her age is 3-6 months (once she can be listed).
**The VAD surgery did improve her pressures after 4 weeks. Addie was listed for a heart transplant on November 3rd. As of February 6th, she is still waiting ♥️
**After 321 days on the heart transplant list, Addie got a heart on September 20,2021. After a little over a month in the hospital she was able to come home on October 22nd. She continues to live her best life at home with mom, dad and her sisters.
---That’s where you come in. Though Addie is home now, the costs of her care are still high. The cost of gas and parking at the hospital for multiple appointments, as well as the cost of medications and supplies add up quickly. The biggest costs, however will be the never ending medical bills for all of Addie’s care. Allen and Becky have two older girls at home (5 and 7) and are trying to keep life as normal as possible for them as the navigate this new life with Addie at home. Any stress on them that can be alleviated by covering some of these costs would be greatly appreciated. If you're not able to donate, any prayers would also be appreciated!
Thank you for loving our girl! ♥️
Organizer and beneficiary
Lindsay Humpfer
Organizer
Hebron, IN
Allen Hughes
Beneficiary
