I often hear “I don’t know how you do it, I couldn’t. You are so strong.” To be honest, I don’t know how I do it either. I don’t know how Mason does it. I don’t know how Robert does it. I don’t know how Karsen does it. People often ask us what they can do; how can they help. We always say, prayers, prayers, and more prayers! There is a list of things that we worry about daily. That worry is doubled, if not tripled when we get hit with an obstacle we were not expecting. When we are in Boston, people often want to send us donations, which is why I am making this page. We have a lot of debt due to medical bills and medical travel. Medical travel and expenses bury us; doctor’s appointments, surgery bills, gas, food, hotel, etc. It adds up quick. We never know how long we will be gone when we go to Boston. A few weeks; a couple months; we never know. What does not stop are the bills we have here in NC which adds to the debt we are currently in. What stops at times is income. Robert and I work. He is a Fire Engineer and he owns a pressure washing business. I am a Licensed Practical Nurse and I own a skincare business. I am still in school pursuing my RN. We often have to say no to fun things we want to do. Mason and Karsen have been asking to go back to Disney World. We went a few years ago for Mason’s Make A Wish trip.
We live this unknown life. We never know what is on the other side of the door at one of Mason’s doctor’s appointments. I feel like I am drowning in more ways than one. This journey we are on is never ending. This journey we are on is expensive but we will do whatever we have to do to get Mason the best medical care. He deserves the best quality of life we can give him. It seems to get harder and harder each time we face an obstacle. How easy can it be preparing for your 6 year old son’s ninth open heart surgery?
Our current slap in the face has came on quite sudden. They placed a new pacemaker generator on April 14th 2017 which comes with a 10 year battery life. We know that changes based off how much Mason’s heart uses it. We knew leaving Boston that there was an issue with one of the leads. It was requiring more power but at that time was considered normal due to just undergoing 2 open heart surgeries. We came home and had his clinic pacemaker check in July and we were given 2 to 3 years left on the battery life. In September, 1-2 years of better life left. At the end of November, 8-11 months of battery life left. We thought we would be headed to Boston for a routine cath they do one year after placing a stent and an open chest surgery to change the lead and generator. That has now changed. In February, Mason started complaining of having trouble breathing. Robert and I saw no signs of distress but we took him for a checkup because he has never complained of that without there being and obvious reasons like a cold. They found some changes in his heart that are sending us to Boston for his 9th open heart surgery sooner rather than later. Mason is anemic, very tired, has a cough, has ran a couple fevers since this all started, has an enlarged liver, has been having stomach cramping we think from taking Tamiflu, Augmentin, and an Iron supplement.
They have to open his chest each for each surgery. This involves cutting open his sternum. When the surgery is finished, they use wires to hold the sternum together so that it can heal. Earlier this week, one of those sternal wires has made its way to the surface of the skin and has made a hole. We will be treating this with antibiotics and wet to dry dressings until we get to Boston.
Donations are not expected but will be greatly appreciated! Unfortunately, we are always in need. Wow, that was hard to type, had to swallow my pride and just say it. We need help.
Here is a bit of background on our story….We are a family of four. Robert and I married in 2010. Our son, Mason, was born with Heterotaxy and complex congenital heart defects. Our daughter, Karsen, was born in 2012 without any issues. We had no clue Mason had any issues until after he was born.
Here is a gist of what Mason has been through over the past 6 years.
“Mason was born on June 7, 2011. We got the devastating news that Mason was born with Heterotaxy Syndrome. It is a rare birth defect that is defined as “Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. For example, instead of the heart normally forming on the left side of the chest, it will be located on the right side. Heterotaxy has been known to affect the development of the heart, liver, lungs, intestines, and spleen. Babies with Heterotaxy syndrome are usually first identified because they have structural problems with their hearts or livers.” We were told that Mason would need a series of three surgeries to save his life. We quickly learned that Mason didn’t go by any textbook. He was diagnosed with many defects including unbalanced AV canal defect, interrupted IVC with azygous continuation, coarctation of the aorta, malrotation of the intestines, midline liver, stomach not where it should be, and he requires a pacemaker to keep a steady heartbeat.
Three days after his birth we were transported to Brenner's Children's Hospital where we began our journey. He underwent the Ladd's procedure to correct intestinal malrotation at 4 days old. He faced his first open heart surgery (Norwood procedure) at a month old. He had a complication with a paralyzed diaphragm which required surgery to repair it. At this time his pacemaker was implanted due to heart block. We had several hiccups after this surgery but Mason pulled through.
He was just over 5 months old when he underwent his 1st heart cath and his 2nd open heart surgery (Bidirectional Glenn). He recovered amazingly and was discharged on day 8. This was a scary but exciting time for us. We found out we were pregnant with our second child days before Mason went into to surgery. His sister, Karsen, was born on June 28th 2012.
Mason was NG(nasogatric) tube dependent for the first 19 months of his life. In December of 2012, he participated in an intensive day feeding program in Richmond, VA where we lived for 2 months. We were able to wean him totally from his feeding tube. We struggled for a couple years getting him up to speed, getting him to age appropriate foods. If you ask him what his favorite food is now, he will first say white rice and then steak. Until we dealt with this, I really never thought about how difficult it is to teach someone to chew.
Mason’s medical conditions are so complex, we decided, along with his local cardiologist, that we would take him to a hospital that was more experienced with Heterotaxy. We would have to tell the doctors around our home town Heterotaxy was. It is that rare. 4 in a Million.
In May of 2013, we traveled to the Children’s Hospital of Philadelphia (CHOP) for his 3rd heart cath to gather information to see if his body was prepared for the third surgery, what we thought to be the last. The doctors were confident that he was ready. Mason underwent his 3rd open heart surgery (Fontan) on July 26th, 2013. All was well after surgery, for the first 12 hours. Things started to go downhill quickly and the doctors couldn’t find a reason why. In the early mornings of July 28th, 2013, Mason underwent an emergency heart cath to see if they could find out why Mason’s body wasn’t handling the surgery. Nothing was found. He still continued in a downward spiral. The surgeon decided that on July 30th, he would go back in for is 4th open heart surgery to reverse what they had just done days before. Mason came through this fourth surgery okay. And, he continued to improve over the next few weeks. We were so happy that he was able to bounce back to how he was before arriving in Philadelphia. Lots of discussion happened between the local doctor, CHOP doctors, and us about what the next step should be. We were given two options; retry the surgery that failed at later date or heart transplant. We even met with a transplant cardiologist to learn more about what happens before, during, and after a transplant. We were not ready to settle for these options so we reached out with the blessing of Mason’s local cardiologist to Boston Children’s Hospital for another opinion.
Boston offered us another option that we were told would never work for him. So, we went there in July of 2015. Mason underwent another heart cath on July 24th, 2015 and then underwent his 5th open heart surgery (biventricular conversion, pacemaker generator change and moved) on July 27th, 2015. This surgery involved taking down everything that had been done since Mason’s very first heart surgery and proceeding down a different path. It was a long surgery; 10 hours. Mason flew through this surgery like the superhero he is. Almost always, patients come back from the operating room on several heart medications. Mason came back without any heart medications and it was a huge surprise to the surgeon and his team. We were home fairly quickly, within 3 weeks after surgery. Things were going great for a while until Mason had his four month post op appointment here at home. This is when they found that his mitral valve was leaking. Wow, what a slap in the face for us. No leak to a moderate leak in four months was very unnerving. This was the first time that we really felt blindsided. This is the first time we really understood that his heterotaxy, his heart defects can’t always be seen. We went in to that appointment feeling amazing and within an hour we were leaving scared, crushed, and shocked. That meant planning a second trip to Boston for another open heart surgery. The discussions started fairly quickly and we were set to go back to Boston in July of 2016. Mason underwent his 6th open heart surgery to repair his mitral valve. It was a success! He recovered well! We got home just in time for his Kindergarten year to start. Mason loved it!! School, friends, his teachers! It put a smile on our faces that he loved school so much. I guess we shouldn’t have been too surprised because he and Karsen loved their preschool.
Kindergarten was a rough school year for Mason. From day one, he seemed to catch anything and everything. He was hospitalized 3 different times for at least a week at a time for respiratory issues, mostly pneumonia. This winter was different that any other. We were always told that Mason could get sick easier than us and other kids so we needed to be careful. The truth was that he handled colds better than the rest of us in the house. Something flipped his kindergarten year. Come to find out, it was his heart. His mitral valve had another mild leak in to and they believed that the left lower pulmonary vein was getting much low through it. Everything seemed to be backing up making his lungs constantly congested so when he caught a virus, he couldn’t handle it like he normally could. He would have to be hospitalized because he required more oxygen than they we felt comfortable giving at home; he required IV antibiotics to help knock that stuff out. After the 3rd hospital stay, Robert and I made the choice to pull him from school for the rest of the year. His teacher would come tutor him to keep him caught up so that he could pass kindergarten. I was nearing the 2nd semester of my practical nursing program when we had to pack up and go to Boston for another cath and another surgery. Thank goodness for amazing teachers or I would have had to drop out. This surgery involved the placing of a stent in his left lower pulmonary vein to help get blood flow to that lung. A lung scan showed that 85% of blood was going through his right lung. The surgeon was also prepared to place a mechanical valve instead of trying to repair what he had already worked on twice. He decided differently once he was in there because he saw exactly what needed to be fixed. No mechanical valve. A new pacemaker was put in and new leads were as well. WE were advised that another cath would be recommended at the one year mark (April of 2018) after placing the stent. It’s their protocol.
Mason’s surgeon saw an issue within the first 24 hours that called for a CT scan to confirm. The stent they placed was too long and it moved into one of the pulmonary branches that narrowed the stent on one end. This structural issue was showing evidence of a “clot.” A week later, for the 8th time, they cut his chest back open to replace to stent with a shorter one. He recovered well and we returned to North Carolina hoping and praying that Mason could catch a break. Heart surgery for the ninth time. I am not ready, I think I am actually still numb from all that has happened over the past month.
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