Throughout much of this year, our blog posting discipline has been lax. This is not because important events and milestones have not happened, it’s just that life tends to get in the way of writing most days. In recent weeks, we celebrated Savannah’s big birthday. Yep, our Heterotaxy Hero turned 1. Also, an exploratory heart cath on October 16th gave us a big reason to wait on her heart surgery. Savannah’s heart function is good, her lungs are protected, and she is slowly but surely growing. This meant Thanksgiving at home and now Christmas too! This is such a huge blessing, but alas Savannah’s surgery will be here soon enough. Our new date range is late March or early April 2015.
From the outside, it’s hard to tell that there’s really anything wrong with Savannah. Beyond being small for her age, she is quite healthy. Frankly, it’s fairly miraculous when you consider at her Heterotaxy diagnosis. From the cardiac aspect alone, the list is quite overwhelming:
- Bilateral Superior Vena Cavas
- Complete Atrioventricular Canal
- Congenital Pulmonary Valve Stenosis
- Double Outlet Right Ventricle
- Malposed Great Arteries
- Patent Ductus Arteriosus
As we explain Savannah’s heart conditions and share our journey towards Boston, we get many of the sames questions. The first: Why Boston? The answer is simple, yet multifaceted. We believe that Children’s Hospital in Boston is the best place to have Savannah’s surgery. When we first started looking at pediatric heart programs before Savannah was born, we quickly narrowed our list based on input from various sources. We asked other heterotaxy families where they went, we reviewed guides like U.S. News and World Report, and spent hours on Google. When dealing with this kind of cardiac repair, it’s more than just selecting a hospital. You’re selecting a surgeon. Even before Savannah’s birth, we reached out to the Chief of Cardiac Surgery at Boston Children’s Hospital, Dr. Pedro del Nido. Dr. del Nido agreed then to take Savannah on as a surgical patient. Dr. del Nido has nearly 30 years experience in pediatric cardiology. He also has an extensive record of repairing complex hearts like Savannah’s.
One of the other top questions we receive is: What are they going to do when you take Savannah to Boston for surgery? This is a question that we can vaguely answer. The goal is to get Savannah to where her heart will have 4 separate chambers that can do the job God gave them – a biventricular heart. Right now all the oxygen-rich and oxygen-deficient blood is mixing together within her heart. Dr. del Nido will need to repair her complete AV canal defect to separate the oxygen-rich and oxygen-deficit pumping chambers and valves. Then he’ll need to address her double outlet right ventricle/malposed great arteries, pulmonary valve stenosis, bilateral superior vena cavas, and probably remove her ductus arteriosus. Can all this be done in one surgery? We don’t know, but it would be awesome if it could. How will all of these issues be addressed? We don’t know. When will you have the plan together? Much of the plan we’re already making, the finer details will be decided in the days before her surgery, and some decisions will likely be made once Dr. del Nido gets Savannah into the operating room. This is one of the main reasons we need to have an experienced surgeon with a knowledgeable and advanced support team along side him to make this repair a success for Savannah.
Beyond the stress of having a child that needs such a complicated surgery, we have the added stress of going to Boston, Massachusetts to have that surgery. Frankly, this is going to be a very expensive endeavour. Despite working two jobs and running my own company alongside Lori’s thirty-one bag sales, we don’t make enough money to cover all the upcoming costs ourselves. In all honestly, we hoped to be much farther along in this fundraising journey, but there were several fundraisers that were promised that never actually happened. When we look at our budget and upcoming expenses, we are needing to raise $25,000 between now and March 15, 2015. Yes, that is a lot of money, at least by our economics. Thankfully, we’re leaving this to God’s economics. God knows the need, and we’re trusting God to provide. In fact, we don’t have any plans outlining how to raise this much money. That’s why we’re asking for your help. We know that so many people are ready and willing to help, they simply don’t know of the need.
If you’d like to donate, please visit our donation page. If you’d like to help Savannah with some kind of fundraiser, please contact us by commenting below or find us on facebook.