Thank you for visiting our page in support of Team Lexie!
We’ve decided to get involved with the Boston Children’s Hospital Eversource walk in support of the excellent care we’ve received for our daughter, Lexie, this past year. Lexie was diagnosed with PAPVR (Partial Anomalous Pulmonary Venous Return) and PAS (Pulmonary Artery Stenosis). Both conditions are forms of congenital heart disease, which in our case, became known after her pediatrician detected a suspicious heart murmur at 3 weeks old. That started our journey to cardiologists and tests such as EKGs, ECHOs, Chest CTs and Lung Scans. She eventually had a Diagnostic Cardiac Cath performed on July 13, 2016 when she was almost 10 months old.
A multidisciplinary team met afterwards to review Lexie’s case and discuss her path of care. It was decided that she should first undergo open heart surgery to fix the PAPVR, a structural issue where 2 of her pulmonary veins were misplaced. In her case, all 4 pulmonary veins were dumping into the right side of the heart creating extra blood flow requiring that side of the heart to work harder. It was also insufficient in supporting the oxygenation to the lungs. While it’s an important diagnosis, it’s not usually an issue that requires urgent fixing and she was also asymptomatic. However, she also had extensive PAS where her pulmonary arteries, including many distally located, were stenosed (narrowed) and insufficiently allowing blood to flow through to the lungs. The medical team decided to fix the PAPVR first to normalize the blood flow to see if that may better improve the PAS.
Lexie underwent open heart surgery on October 14, 2016. Dr. Chris Baird at BCH was her surgeon and an expert on congenital heart valve issues. Those were the longest few hours of our lives, including the 45 minutes where they had to stop her heart and put her on the heart-lung machine. The surgery was a success (!) and we were sent off to the BCH ICU. That was also one of the longest nights of our lives. The nurses were amazing at keeping her comfortable through heavy sedation medication, but then the time came to extubate which creates discomfort. Lexie was only 14 months old and had just started walking and learning words. She got “mommy” and “ow” down during her stay and even began singing “Twinkle Twinkle Little Star” with me. She recovered really well and after a few days we were able to take walks around the ICU floor and then eventually moved to the inpatient floors where she could walk her way down to the Cardiac 8East activity room (while still hooked up to drip lines and leads dangling from behind) and play with all the toys other people had donated to the hospital. We were discharged a week later, on October 19th and sent home without many restrictions, except for having to scoop when picking her up, to limit any tear on her sternum. We were given time to recover and had check-ins with her local cardiologist. Just a few months later she was scheduled for another Cardiac Cath to check the status of her PAS and likely do an intervention.
On January 25, 2017, Lexie had her second Cardiac Cath procedure and this time they did balloon dilate 8 pulmonary arteries which, for such a small person, was a big intervention. Dr. James Lock at BCH did the procedure and we were sent home the next day!
So that’s where we stand today with a plan for another Cardiac Cath with more balloon dilation to more pulmonary arteries scheduled April 25th and we’ll go from there, potentially every 3-6 months, until her arteries are cleared and let’s pray for no re-stenosis.
Thank you for reading Lexie’s story and considering supporting us as we walk to support BCH and the exceptional care they provide to kids and families across the world. We’re also doing this to support the families who are less fortunate than us. Lexie is otherwise quite healthy and not a typical CHD patient who have many more health issues and required procedures that may require one parent to not work. We are also very fortunate to live within an hour drive to the hospital. We’ve met families who travel from so far and have to endure the expenses that come with airfare, hotels, and food. Money raised during this walk does support these needs as well as other high priorities that impact patient families.
If you’re interested in joining our team, just register within this page. We’ll be walking the 6-miles!
Jay & Lauren Leavitt - and Team Lexie!