**update** Many have already read Lexie’s story and know her history with CHD. We recently had her second Cardiac Cath Balloon Septostomy procedure and wanted to provide an update here on how that all went and what our future holds:
Lexie had her second Cardiac Cath intervention April 26th to balloon dilate more pulmonary arteries to fix her pulmonary artery stenosis (PAS). Thankfully there was no re-stenosis from the last visit. However, the procedure was not as smooth this time around. Dr. Lock was able to balloon dilate 5 arteries on her right side, but apparently her left-side pulmonary arteries were not responding well to the regular balloons, so he tried a cutting balloon which scores the artery walls first and then balloons the artery to improve the width and ultimately blood flow. It’s a common next step, prior to stenting; however, the balloon ruptured. This caused a larger tear in her groin in the process of the team pulling the balloon catheter out of her femoral artery. The nurses worked to hold pressure at the site to prevent any major blood loss, but during the process her bloods levels decreased and she required a blood transfusion. The good news during this scary process was that her vitals remained mostly stable, but her coloring became mottled (a new word to us) throughout her body. This was concerning to the medical team, so they did some extra testing to ensure there were no other issues including internal bleeding or damage to the heart. There was a question at the time about whether or not she’d be sent to the ICU for the night before going to the regular inpatient floor as planned – requiring one extra night in the hospital. You know something’s not quite right when the doctor calls you out of the waiting room and into the consult room. Our hearts sank and it was a lot of information to take in at the time, but just a half hour later we got the call that she had improved and all tests showed normal results so we were sent back to the procedure room to see our little girl. Unfortunately just a few minutes into the room Jay noticed bleeding at the Cath entry site and a rush of nurses and doctors came in. They sedated her yet again and continued to hold pressure again to limit the bleeding, all while Jay and I stood there scared and unsure what it all meant, but holding Lexie’s hand. The team was amazing and finally all the scary stuff was over. Lexie finally got her “bubba” and we watched her favorite movie – Zootopia before moving up to the inpatient floors for the night. Her right leg was a bit swollen and red as compared to her left, but improved in the morning and we were discharged home. At the end of the stay, after everything that happened, the final results from her procedure were positive. Her blood flow is improving at each visit and getting closer to normal.
This was a tough one and unfortunately not our last. We’re looking to schedule her next balloon septostomy in 4 months and likely continue for the next few years. Lexie is a tough little cookie. We’re fortunate to have these medical experts close-by and that her overall prognosis is excellent; these first few years of her life will not limit any of her future aspirations. We’re lucky Lexie is quite healthy otherwise day-to-day and this walk / story is our way of coping with the issue and supporting the excellent care BCH provides to kids and families all over.***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 26th 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 may have health issues and required procedures in and out of the hospital. We are also very fortunate to live within an hour drive to BCH. 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!