Landon Robert, Heart Warrior
Donation protected
On June 3, 2019 our sweet boy Landon Robert Truong was born at Kaiser Sunset, Los Angeles. What seemed to be a normal, healthy pregnancy was all changed at 20 weeks pregnant. It was then David and I learned Landon had congenital heart defect called Tetralogy of Fallot. Congenital Heart Defects are problems with the heart's structure that are present at birth. According to the CDC, congenital heart defects (CHDs) affect nearly 1% of births per year; of those babies, about 25% have a critical CHD. Infants with critical CHDs generally need surgery or other procedures within their first year of life. Landon's specific CHD, Tetralogy of Fallot (TOF), is estimated to affect approximately 1660 babies in the United States; or 1 in 2518 babies born in the US each year are born with TOF. TOF is the most common of the critical CHDs and is a combination of four defects.
- Pulmonary stenosis.
- A large ventricular septal defect.
- An overriding aorta. With this defect, the aorta is located between the left and right ventricles, directly over the ventricular septal defect. As a result, oxygen-poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery.
- Right ventricular hypertrophy. In this case, the muscle of the right ventricle is thicker than usual because it has to work harder than normal.
Immediately after birth, Landon was taken to the Neonatal Intensive Care Unit. On June 6, at 3 days old, Landon was taken to the Cardiac Catheterization Lab to potentially have stents placed into his pulmonary artery. Dr. Salem was able to place 3 stents into the pulmonary artery, improving his oxygenation and blood flow. The breathing tube was able to come at that night and his oxygenation was doing well without any supplemental oxygen. On day 4, many of the intravenous and arterial lines were removed and supplemental nutrition was stopped. By June 8th (day 5), we were finally able to hold him and he was eating from a bottle. On Monday June 10, day 7, our little Heart Warrior came home with us.
Landon has been recovering as well as we could hope, but there have been some snags. On October 8th, during one of his normal cardiology appointments, Landon's oxygenation levels dropped too low. He was readmitted to Kaiser Sunset the next night. Landon made another trip to the Cardiac Catheterization Lab where Dr. Salem placed an additional stent into the pulmonary artery, making a grand total of 4 stents. Unfortunately, the stents are not a permanent fix. When Landon is between 6-8 months, Dr. Kallin at CHLA will be performing an Open Heart Surgery. We expect to be there between 5-10 days in the Cardiovascular ICU. Anticipated recovery post surgery is approximately two months.
We love taking care of our Heart Warrior but there is definitely a lot that goes into a Heart Baby. The hospital has attempted to house us in the Ronald McDonald House but unfortunately we were not able to get into it as it is greatly impacted. We have instead commuted from Corona to LA or have stayed in a nearby hotel. Landon also has many follow up visits in addition to his normal pediatric appointments. Each week there's either a follow up appointment, cardiology, physical therapy, occupational therapy or some other specialty appointment; some days there are more than one. In addition to his heart surgery(ies), Landon will also need urology surgeries within the next year. David and I will also be taking additional time off work to care for Landon during his recovery. We decided to setup this page to help support some of the financial needs in our/Landon's future. While we don't know how much everything will be, the out of pocket costs have already started to build. Thank you in advance for all the love and support for our sweet boy.
- Pulmonary stenosis.
- A large ventricular septal defect.
- An overriding aorta. With this defect, the aorta is located between the left and right ventricles, directly over the ventricular septal defect. As a result, oxygen-poor blood from the right ventricle can flow directly into the aorta instead of into the pulmonary artery.
- Right ventricular hypertrophy. In this case, the muscle of the right ventricle is thicker than usual because it has to work harder than normal.
Immediately after birth, Landon was taken to the Neonatal Intensive Care Unit. On June 6, at 3 days old, Landon was taken to the Cardiac Catheterization Lab to potentially have stents placed into his pulmonary artery. Dr. Salem was able to place 3 stents into the pulmonary artery, improving his oxygenation and blood flow. The breathing tube was able to come at that night and his oxygenation was doing well without any supplemental oxygen. On day 4, many of the intravenous and arterial lines were removed and supplemental nutrition was stopped. By June 8th (day 5), we were finally able to hold him and he was eating from a bottle. On Monday June 10, day 7, our little Heart Warrior came home with us.
Landon has been recovering as well as we could hope, but there have been some snags. On October 8th, during one of his normal cardiology appointments, Landon's oxygenation levels dropped too low. He was readmitted to Kaiser Sunset the next night. Landon made another trip to the Cardiac Catheterization Lab where Dr. Salem placed an additional stent into the pulmonary artery, making a grand total of 4 stents. Unfortunately, the stents are not a permanent fix. When Landon is between 6-8 months, Dr. Kallin at CHLA will be performing an Open Heart Surgery. We expect to be there between 5-10 days in the Cardiovascular ICU. Anticipated recovery post surgery is approximately two months.
We love taking care of our Heart Warrior but there is definitely a lot that goes into a Heart Baby. The hospital has attempted to house us in the Ronald McDonald House but unfortunately we were not able to get into it as it is greatly impacted. We have instead commuted from Corona to LA or have stayed in a nearby hotel. Landon also has many follow up visits in addition to his normal pediatric appointments. Each week there's either a follow up appointment, cardiology, physical therapy, occupational therapy or some other specialty appointment; some days there are more than one. In addition to his heart surgery(ies), Landon will also need urology surgeries within the next year. David and I will also be taking additional time off work to care for Landon during his recovery. We decided to setup this page to help support some of the financial needs in our/Landon's future. While we don't know how much everything will be, the out of pocket costs have already started to build. Thank you in advance for all the love and support for our sweet boy.
Organizer
Takara Truong
Organizer
Corona, CA