Charles was born 6 weeks premature. He is our miracle IVF baby! When he was 3 days old, they found his heart problems. We were referred to Texas Children’s when Charles was around two months old. Texas Children’s did all kinds of testing and told us Charles has Tetralogy of Fallot and 2 heart murmurs. They did surgery when he was almost six months old to repair the TOF and murmurs. He will eventually have to have another surgery to replace one of his valves. He has restrictions on contact sports. But he is very blessed that he doesn’t have to take medications every day and can run, play golf, and work out. He loves guns and hunting! Hunt with Heart has been a dream come true for Charles! Thank you Hunt with Heart, for all you do for these kids!
My name is Jakob Cobucci or aka “Swamp Donkey”. I got my nick name from my first memorable trip to Hunt with Heart’s Camp Beaver Creek.
I was born on May 22, 2000. I was a very energetic child, very athletic, and never met a stranger. In October 2013, I was in a bull riding competition when a bull stepped on my chest. Shortly after that I came down with a common cold and I went to my general doctor. The doctor told us he heard an extra sound and was referring me to a pediatric cardiologist. I had never seen a cardiologist up until this point. A few days later I saw local cardiologist who told me that I did in fact have a condition called Microvalve Prolapse which I was actually born with and had nothing to do with the bull stepping on my chest. My condition had just made itself more evident as I was getting older. My valve was at 3% which meant only 3% of the blood that went through would invert back through the valve correctly. I was told everything was fine and to continue on with my everyday life as I always had. The doctor told me I could continue bull riding, playing football and everything as I always had, and we would check on it once a year. That year, I went on to win and became the Louisiana Junior High Reserved Bull Riding Champion for the State and went to compete for the National Finals Rodeo for the National title in Des Moines Iowa. For the next three years I did my yearly appointment with the valve every year closing more and more going from 3% to 1% to 5% to closing all the way on its own.
I have played on my Jr high and high school football team since the seventh grade, but days before I started my Junior year, I went for my heart appointment and they discovered something was different. The walls of the left side of my heart had thinned and weakened and no one knew why. I was referred to Texas Children’s Hospital where I met the wonderful Miss Corey Gates and Dr. Denfield. Over the next two years, over multiple appointments they ended up diagnosing me with atria tachycardia. I had to take medication, exercise, and watch my diet. I worked very closely with my doctors and Miss Gates with my condition along with my coaches. I was allowed to play my Junior and Senior year of football while it was limited, I was still able to be a part of the team and able to mentor my younger teammates which meant the world to me. I played free safety, kicker and defensive lineman. I ended up getting Academic All State for defense for lineman.
Miss Corey introduced me to Hunt with Heart. I had the opportunity to take my uncle, who I normally go hunting with, to Beaver Creek Ranch. While there, we went fishing, hunting, (I choose to go into the swap for my hunt which is how I got the nickname “Swamp Donkey) we had confetti egg fights, water balloon fights, and lots of fun. It was so memorable and amazing for all of us. I got to meet some amazing young men and ladies, the coordinators of Hunt with Heart, the owners of Beaver Creek Ranch and a lot of people that helped to put this wonderful organization. By talking to and listening to the other campers, I realized that some of the other kids did not have the same opportunities to play sports and do some of the things that I had in life, and I wanted to make sure that everyone felt included, felt important, and felt that they were a part of everything that was done the weekend that I was there. I would stop, turn around and go meet them and tell them come on and I would walk with them. No one treated us as if we were sick or as if anybody was any different that weekend. It was great!
I graduated high school last year with honors and I’m currently attending Sowela Community College for welding and on the Dean’s List. HwH help to aspire me to be a better person and a role model for others, to always try to inspire others help where you can and try to make a difference in others’ lives. I was so excited to be asked to come back and help with the HwH Organization. I live in Louisiana and so it is hard for me and my family to make a lot of the events, but we try to make as many as we can because this is an organization that truly touches our family and so many hearts and changes so many lives. It is a wonderful organization. God bless Mr. Jim and Mrs. JoAnne Elzner, Mr. Joe, Mrs. Angelica, Case, Tim, Ms. Allison, and everyone that has ever had any hand in it. You are all truly a blessing. God bless you all. Please continue what you do because it matters to so many!
Thank you again from Jakob Cobucci , the Cobucci and LaRocca Family!
Colman was born March 30, 2004 with a combination of congenital heart defects known as Hypoplastic Left Heart Syndrome, which is fatal within the first week of life without surgical intervention. Colman’s first open-heart surgery, the Norwood Procedure, was performed when he was just three days old. Then he underwent his second open-heart surgery at four months old and his last open-heart surgery was when he was three years old.
Other than hospitalizations for heart surgeries, Colman was a healthy child. He would become tired more easily than his brothers when playing, but if you didn’t know he was a “heart kid,” you probably wouldn’t even notice it. But when Colman was eight years old, he went into heart failure and developed plastic bronchitis. We were then transferred from our home hospital in San Antonio to Texas Children’s Hospital to be evaluated for a heart transplant. Through medication and careful monitoring, we have avoided a transplant at this point and Colman is back to doing well and feeling great. When Colman was invited to go on a Hunt with Heart trip, he was ecstatic. He loves the outdoors and often expressed his disappointment that he was unable to attend summer camp in the Texas Hill Country with his brothers. Colman returned from his Hunt with Heart trip with new friends—heart friends, who were exactly like him. Colman had lots of fun stories to tell about everything from learning to shoot a rifle to tracking and shooting a ram.
Colman is now 14 years old and a freshman in high school. He enjoys tennis, golf, and beating the pants off his brothers in every single game of chess they challenge him to. And he loves to hunt when he gets the chance!
Alex was born March 1, 2002 at a local Texas hospital about 4 weeks early. I wasn’t able to hold him yet since he had to go get checked because his murmur was louder then normal. He had an echo done and that’s when they came with the news. He was born with several defects to his heart, the main one being Hypoplastic Left Heart Syndrome. He had a multitude of heart issues, heterotaxy single ventricle, complete atrioventricular canal defect, atrioventricular discordance, double outlet right ventricle with severe valvar and subvalvar aortic stenosis, crisscross pulmonary arteries, and coarctation of the aorta. I was able to see him for a few minutes when he was about 8 hours old before he was transferred to Texas Children’s Hospital. Alex had his first surgery, the norwood, at 8 days old on March 9,2002. He did really well and was in the hospital for around 2 months before he came home. He was so little bitty around 4.8lbs. It’s so hard to imagine him that small now. There were a few up’s and down’s but nothing major. When he was 5 months old on July 19 he had a heart catheter done with two stints put in for the coarctation of the aorta. It was suppose to be a short visit but we ended up staying for a week due to a bleed behind his bladder. When he was 6 months old on August 28th he had his second surgery, bilateral bidirectional glenn. He did really well and was discharged 4 weeks later. Alex was a happy kiddo and loved to laugh when he was little. Very active and didn’t have many issues throughout the toddler years. Right before the age of 4, on February 14, 2006, happy heart day, he had the fontan surgery. This one was a little bit more scary since he had a bleed and had to do an emergency open at bedside on the 16th but this strong boy kept on fighting. Up to date Alex is doing extremely well. He joined Hunt With Heart in the fall of 2014. Alex has always loved shooting guns, being outdoors, and 4-wheeling. I always wanted to take him and his sister hunting but time and work just didn’t work well. Alex and his dad went on his first hunt at Beaver Creek Ranch where he was able to shoot his first ram. We were so proud of him and he was even happier. Over the years Alex has been able to go hunting 3 times and loves every trip. Hunt with Heart has provided him with an experience of a lifetime and he will always be a member of this wonderful group. At the strong age of 17 now he is doing extremely well. He loves to go to the gun range to practice, ride his bike, play video games (of course), and learning how to drive. His sister, Liz, has been a big help in his life and he adores her even though they have the sibling fights. Alex has always been a fighter when it comes to his health. He is always trying to do things better and learn as much as he can. His heart is doing awesome with no complaints from cardiology. Alex loves life and can’t wait to see what the future will bring.
“Zak was diagnosed with hypertrophic cardiomyopathy at the age of 4, and we were told that he wouldn’t make it to his teen years. In fact, the doctor said, “Don’t blame yourself, you have done everything that you can.” The disease was handed down by his father, and while we knew he had the same disease, we weren’t aware of the seriousness of it until that very moment. In fact, being young and naive, the family always told us that “the females were more heavily affected” because Clarence was doing so well. We had no idea – we were shocked. At the same time, Clarence was finding out that his own disease progression was much further along and our oldest, Quest, also had the disease, though not quite as severe. So, we took Zak and Quest (and our youngest at the time, Sutton) and moved out to Houston to become patients of Texas Children’s Heart Team. It was absolutely, hands down, the best move we’ve ever made. When Zak was 8, he was outfitted with an ICD which later proved to be invaluable as it appropriately shocked him four months after implant. It was while we were in the hospital recovering from the shock when we were given the green light to be listed for transplant. All the evaluations and discussions had come down to that particular moment – we knew it was going to happen, but it was still a sobering moment. Zak did well during our wait, though HCM is sneaky and malicious and took away his ability to walk for long distances at a time or eat normal portions of food. He wound up in a wheelchair about five months before transplant, and it was at this time he was bumped to a higher status – we just needed to get him better. 519 days after we were listed, on a Friday evening, we were called – they had found a perfect heart for my son. Zak was transplanted and given a second chance at life on August 31, 2014. He was 10 years old. During one of the many echoes he endured after transplant, the technician asked us if we had heard about Hunt with Heart. We had, seeing as we had spent so much time at the hospital, and very much wanted to be part of such a wonderful organization. The technician told Zak that she would mention his name to Dr. Dreyer, and when he turned 11, he would be eligible to participate in one of the camps that took place in either the spring or fall. Zak was SO EXCITED! He spent years wanting to be ‘normal’ and wanting to participate in activities that required so much more energy than he had – the opportunity to learn and be part of something just absolutely made his recovery that much easier. Zak went on to participate in the fall camp of 2015, and I can say, without a doubt, that Hunt with Heart is part of our family. Our family suffered a tremendous loss last year, on April 20, 2018, when Zak’s father, Clarence Mortensen, passed away suddenly from cardiac arrest. Hunt with Heart reached out to us and we are forever grateful for all the kind words and comfort they provided during this period. Zak is doing so very well – in fact, today is his birthday (2/12) and he is now 15 years old! FIFTEEN! This is someone who was not supposed to make it to their teens… and now, at 15, he’s wanting to learn how to drive, get a job and give back – the same way Hunt with Heart has given to us. Thank you so much for everything!” -Zak’s Mom
Hi my name is Anthony and sometimes I like to be called Ace. I was born at 35 weeks in Houston, TX with a combination of four congenital abnormalities. These defects, which affect the structure of the heart is called Tetralogy of Fallot. Tetralogy of Fallot is a rare, complex heart defect that occurs in about 5 out of every 10,000 babies. I was born by emergency C-Section on February 22, 2004. My first open heart surgery was at 2 weeks followed by my second at 10 months. The most recent surgery was in 2015 for a catherization at Texas Children’s Hospital. Although at times I might get more tired than other kids, this does not stop me from enjoying the outdoors. Hunt with heart has been a great benefit in making my love for the outdoors even more enjoyable. Fishing being one of my favorite hobbies was how I had the opportunity in meeting my Hunt with Heart family, at a gathering they hosted near Houston, TX. My first time ever going deep sea fishing was at Camp La Pesca with Hunt with Heart. Not only was it my first time going deep sea fishing but also my lucky day in catching 2 red fish with one hook, thanks to the great guides that had the patients in teaching me great fishing techniques. I also had the opportunity of going to Camp Beaver Creek. At this camp I learned the safety of guns, hunting and most of all enjoying all the great food and company of friends with similarities like mine. These memories I’m sure to keep for many years. I am thankful for the opportunities given to me with help of many people who support Hunt with Heart. I thank everyone and hope in making more memories I will cherish in my heart with Hunt with Heart. -Anthony Solis
Brady was born with a congenital heart defect called aortic stenosis. He was clinging to life when he was medically flown to Texas Children’s Hospital in June of 2005. It wasn’t long when the Doctor’s at TCH knew that Brady’s only chance of survival would be a complete Heart Transplant. He was quickly placed on the transplant list. His little body couldn’t fight anymore by himself and Brady needed to be placed on a left ventricle device called, The Berlin Heart. This pump would help keep him alive until he received his new heart. At the time, Brady was the first patient in Texas and one of the smallest in the world to be placed on the pump from Berlin, Germany. On September 29, 2005 at just three and half months old, Brady received his new heart! Transplant is not a cure it is trading one disease for another. He suffers from chronic lung disease and has received treatment at Texas Children’s Cancer Center. Brady travels back and forth from San Antonio to Houston for all of his treatments. Brady has a pretty positive attitude with all of the obstacles he faces throughout his life. He is thirteen years old now and thirteen years post transplant. When he was invited to Hunt with Heart Camp, he was ecstatic! “Mom! Mom, I met my best friend and he’s just like me! This is so awesome, Mom!’ This is the call I got about twenty times in one day because he was SO HAPPY to be at Camp Beaver Creek surrounded by kids that have struggles just like him. He didn’t want to forget any details so he said he “needed” to call me. It was pure joy and happiness in his voice. That weekend was definitely a weekend he will always cherish in his heart. Since then, HWH has become like family. He truly loves each and every one involved. They lift his spirits when he isn’t feeling well and they bring such a huge smile when they visit him in the hospital. The amount of support they give to our family is beyond words. We are grateful and blessed to be apart of the Hunt With Heart family.
On June 21, 1996, we became the proud parents of a 7 lb 10 oz baby boy. When we got home our Ricky Jr. was a good baby. He was a big eater- drinking 3 ounces every two hours. Two weeks passed when suddenly on our way home from my parent’s house, our Ricky Jr. began to cry, and I couldn’t seem to comfort him. I told my husband to turn the car around and return to my parent’s house. Being a first time Mom, I was scared and didn’t know what to do.
When we arrived at my parent’s, Ricky Jr. had fallen asleep. My mom was surprised to see me back, so I explained the sudden outburst of crying. She asked me to spend the night and told me she would help me since Ricky Jr. might have colic. I just had a rare feeling that something wasn’t right.
The next morning, I was up early calling the pediatrician. They could not see him that day and told me to keep my afternoon appointment. I decided to get ready and go early to my OB/GYN follow-up and let my doctor check Ricky Jr. even though he appeared to be okay.
Ricky Jr. slept on the way to the doctor’s office, but as soon as my husband stopped the car in front of the doctor’s office. Ricky Jr. began to cry. I ran ahead and signed in for my appointment. I asked the receptionist if I could get seen as soon as possible because something was wrong with my son. She said she would try to get me in as soon as she could. They were taking long, so I walked to the back of the doctor’s office with Ricky Jr. in my arms. A nurse walked out of a room and I asked her to check Ricky Jr. She told me to hand her my baby and as she reached for him his lips started turning purple and started to turn blue. I was yelling and crying, and the doctors ran out of the patients’ rooms. The receptionist was calling 911 while the doctors stabilized our son. An ambulance arrived within minutes and transported us to the Children’s Hospital emergency room. After three hours of waiting, the ER director told me and my husband that the chest x-rays showed an enlarged heart and a cardiologist was on his way.
The cardiologist examined Ricky Jr. and told us that our son had a heart condition called dilated cardiomyopathy. The doctor explained our son’s critical condition and told us he might not survive the night. We called our family and our church priest came to the hospital to baptize our Ricky Jr. After a month in ICU, he was finally transported to a regular room. I learned how to give him his medications, check his blood pressure, pulse, and temperature. We finally got to take him home as long as we returned to the cardiology clinic on a weekly basis.
We lived with my parents because I never wanted to be alone in case Ricky Jr needed immediate medical attention. For the following three months Ricky Jr. was in and out of the hospital about seven different times. The longest time we had him at home at one time was two weeks. On the final admission we requested our cardiologist send us somewhere my son would have more help.
Ricky Jr. was sent home with a visit scheduled to see a cardiologist in Houston, Texas. The visit was fast and short. The doctors in Houston said they could tell Ricky Jr. needed to be placed on the transplant list just by observing him in my arms. We were given paperwork to read and take home. The hospital would call us, and we would let them know what we decided about transplant. Both me and my husband told them we had nothing to think about, if our son needed a transplant then we were ready. We had already decided we were going to do everything possible to save our baby. Then they told us to wait for their call and be ready to relocate to Houston.
We headed home with some hope. A week later we received a call from our medical insurance company letting us know they were having problems because the hospital in Houston was not in their network. I was very upset and told them we needed help. We could not be waiting while our son was fighting to stay alive. We were then told a hospital in San Antonio, Texas was within their network. They scheduled an appointment for us two weeks later. After a week, Ricky Jr had another episode where he stopped breathing. We were back in the hospital and he had severe heart failure. The Corpus Christi cardiologist contacted the San Antonio cardiologist and Ricky Jr was flown to the hospital.
On the first day we arrived Ricky Jr was placed first on the national transplant list. We were finally listed and waiting for our miracle. On January 15, 1997 we got the call we had been praying for. The surgeon was going to fly to Minnesota and bring back the heart for our son. We were very happy but also very scared. We knew our son needed the transplant and we also knew he could die during the procedure. We called our family, and everyone headed to the hospital. Ricky Jr was taken to the surgical floor about 5 a.m. and we were still awake in a nervous state. We kissed our son as the technicians rolled his bed into the operation room. Each hour we were given updates from the surgical room. Everything was going just as planned. The heart worked perfect for our Ricky Jr. When we saw him for the first time after his transplant, Ricky Jr looked beautiful. He had IV’s everywhere and a breathing tube, but his skin had color to it. He was amazing; he looked like a normal six-month-old baby.
After a week we were sent home. We decided to stay in San Antonio to be close to the doctors who could care for our Ricky Jr. Life was getting to be normal. Of course, we had to get use to our medication routine and doctor visits, but we were glad to be living a stable life away from the hospital. Ricky Jr continued to grow and get strong. He got sick every once in awhile but usually with viruses or normal toddler issues. When he turned five, we got to take him to school to start kinder. He also started playing t-ball. He loved playing with his team and hitting the ball. We loved seeing our baby enjoying life.
At the age of seven, I noticed Ricky Jr. was needing to take naps after school. One of his teachers had also mentioned that he would fall asleep during class. I got worried when I noticed he was having a hard time breathing when we had walked a short distance. At one of our follow up appointments, I told our cardiologist about our concerns. He decided to order a stress test and wait for the results. The results did not show any issues, but the doctor decided to perform a heart cath.
The day of the heart cath we got the bad news that our Ricky Jr. had transplant coronary artery disease. There was not cure and the only thing that could be done was to be re-evaluated and re-listed for another heart transplant. I remember walking into the bathroom at the hospital and getting on my knees to ask for prayers and strength. We did not know what laid ahead, but we knew that we were determined to do whatever we had to do to help our son.
In June 2004 we were sent to Houston, Texas for re-evaluation for a second heart transplant. We went for an appointment at Texas Childrens Hospital. The day of the appointment Ricky Jr was already in a wheelchair because he couldn’t walk very far without his lips getting purple. The doctors told us that Ricky Jr had to be admitted into the hospital and stay inpatient as he waited for his second heart.
Ricky Jr’s eighth birthday came around and we celebrated in the hospital with everyone on the floor. He was on IV medications to help pump his heart and could walk around the floor. He was taking one day at a time and we were enjoying our son to the fullest every day. We were able to have the priest come over and give Ricky classes for his first communion. He was able to complete all his requirements and we were able to celebrate his first communion at the Chapel in the hospital. We had a big celebration after the communion with the whole hospital floor.
On November 8, 2004, Dr. Dreyer asked to speak to me outside Ricky Jr. room. I was so scared and worried because I thought he was going to tell me that Ricky Jr. was coming off the transplant waiting list. Patients get removed from the waiting list when they have fevers and he had not been feeling well a few days before. To my surprise Dr. Dreyer tells me that they got a call for a possible heart for Ricky Jr. I was so excited but didn’t know how to react. Dr. Dreyer explained to me that several tests had to be done before we could tell Ricky Jr because we had to make sure it was the perfect match. I called my husband, so he could join us at the hospital. While we waited to make sure it was the correct heart for Ricky Jr, I packed up his hospital room. Ricky Jr. kept asking me why I was packing up his toys. I couldn’t tell him, so I said I was just trying to make sure we wouldn’t lose his things. A couple of hours later, Dr. Dreyer came back and told us the heart was coming soon and we could tell Ricky Jr. now. Dr. Dreyer had the honor of telling Ricky Jr. his heart was on his way. I’ll never forget the expression on his face. He was so happy he raised his arm with a fist and said “Yes”. The surgery started that evening and went through the night. Our families were with us in the waiting room and every hour we were updated as the surgery progressed. We were blessed with a successful surgery. Our Ricky Jr. did well and was moved to a regular floor fast. We decided to relocate to Houston, Texas after Ricky Jr.’s transplant so we could be closer to the hospital for all his follow-ups. Once again, we created our home and created our own normal life. Our Ricky Jr. started school, my husband transferred from his San Antonio job to Houston, and I went back to college. Ricky Jr. had too many heart cath’s that we lost count. He had good biopsy scores and some scary ones, but he was healthy. After three years in Houston, Texas, we made the hard decision of moving back to San Antonio, Texas.
During one of his follow up visits in 2013, Dr. Dreyer mentioned he was part of Hunt with Heart and thought Ricky Jr. might enjoy going to camp. We were sent all the information and got him ready. He was able to attend the Spring Camp of 2013 with my husband. I remember being worried because I couldn’t reach him or my husband. When they finally called me, they were having such a great time they didn’t want to come home. Ricky Jr. couldn’t stop talking about camp. He enjoyed shooting the guns, hunting, and eating all the good food at Beaver Creek Ranch. I had never seen him so happy. Hunt with Heart has been such an important part of his life. He’s been able to enjoy outdoor living. We would have never known how much he loves hunting. He’s made some friends and enjoys seeing everyone every year at the Clay Shooting event and Christmas party. Thank you everyone at Hunt with Heart for helping Ricky Jr. enjoy Life and step away from all the medical issues he’s had to live with all his life.
We appreciate all you do,
The Rivera Family
Kooper was diagnosed with Hypertrophic Cardiomyopathy in 2012 just 2 weeks after his brother, Case, was diagnosed. HCM is a genetic disease causing the walls of the heart to abnormally thicken. As with many heart conditions, pulling all competitive sports and activities is the first thing they did. Kooper was diagnosed the same week he was going to start his 7th grade year off as quarterback of his football team. This was a huge adjustment for a fit, active, athletic kid! It has been 6 years since his diagnosis and Kooper has found many things he loves and enjoys. He is an avid hunter and is learning guitar. He is now a freshman bible/missions major at Abilene Christian University and plans to minister to youth and family. His time at the Hunt With Heart camp last spring gave him a chance to spend quality time with other kids with the same health challenges as him. Harvesting a big Corsicana Ram topped off a great weekend! This fall, he was able to be junior counselor for HWH and was blessed to get a huge, beautiful Eland. What a memory and experience he will never forget! Thanks to HWH! We are proud to be part of the HWH family!
The day Raymond was born was full of commotion, anticipation and excitement. they were late getting me in to the delivery room Velinda was not doing so good cause her blood pressure was up high and they could not get it down, they brought me into the room and once she knew I was there her pressure started coming down, they were well into the C-section and Raymond popped out minutes after I was in the delivery room, so much for pictures. They were working on Raymond at the time and were giving him oxygen to bring him around; his first cry was like a kitten real soft and barely could be heard. After a few minutes of oxygen and crying they let me take him to see his mother and then off to the nursery. They measured him took his weight, cleaned him up and he got his first shot in this new world of being poked, prodded and examined. We were the proud parents of a baby boy 6lbs. 3oz.
The day he was born the pediatrician examined him and detected a slight heart murmur, he then came to visit us in the room and the questions started, how are you doing , how is your family doing , dose any one in your family have heart problems that you know of . Then well we have detected a heart murmur in your baby boy and we are going to monitor him while he is in the nursery, and we may want to do an echo before he is discharged. That’s when things started getting fuzzy, things were not right and everything was slowing down in my mind. This was not happening! Things were happening so fast and then real slow, his doctor ordered an echo before his discharge but since he did not state that it was an emergency, the attending discharged us on a Saturday morning to go home since Raymond’s doctor was not on call for the weekend.
Monday morning Raymond’s doctor called us first thing wanting to know why we did not have the echo done, then he went on to say he had ordered the echo to be done before his discharge. So, since he was discharged the calls started to get Raymond scheduled for a heart echo. But in the mean time he gave us instruction to keep an eye on Raymond and told us to watch for color changes in his fingers and legs and if he turned blue and stayed blue for several minutes to call 911, finally after two months he was scheduled for an echo. The day of the echo we did not know what to expect they sedated Raymond and ran the test, on the screen there were pictures of the heart and we could see it beating and red and blue colors going all over the place and no one would say any thing, we asked questions and all they would say is your doctor will let you know something after he reviewed the tape. several more doctors popped their head in the room and the would concentrate the picture in an area of the heart for more detail and more pictures the whole process took over 2 hours and they still were looking and different areas of the heart. Finally they were finished with the echo and we then went to the clinic, where we met with the cardiologist , at the time it didn’t dawn on us that there was a real problem , he said he was going to bring Raymond’s condition before the panel for discussion and he would call us for an other appointment after the panel has reviewed the case , we should have known this was serious when the cardiologists gave us all of his phone numbers and told us to call if anything changed in Raymond’s condition day or night.
About three weeks went by and the panel met, we were called in for an appointment at TCH and we thought ok everything will be ok nothing is terribly wrong and the will be able to correct the problem with medication. Well the appointment was with the surgeon that was going to do Raymond’s surgery. SURGERY yes surgery. he was very straight forward and did not beat around the bush, he said Raymond had DORV and with out surgery his life expectancy was six months, at that time I believe I went into shock I could hear the doctor talking but all I could comprehend was bla bla bla . Everything went into slow motion and it was like I was seeing someone else, this was not happening to us. It couldn’t we have a beautiful little boy without any scars and they are talking open heart surgery and cutting him and he will have this tremendous scar on his chest. They discussed the surgery and told us that they would update us every hour on his condition during the surgery and if we had any questions. I don’t believe I comprehended any thing, here you just dropped this bomb shell and you want to know if I have any questions. They scheduled the surgery for when he was 6 months old. Till he turned six months old we had to watch very closely and check his condition at all times, Velinda would have me check on him in the mornings before going to work, just to make sure he was still breathing. I remember breaking down several times and some evenings I think I cried myself to sleep. I had several dreams or visions where I would be dreaming the worst and a voice would wake me up and say he will be fine I have a plan for him and everything would be calm and I would drift off to sleep again.
When we reached the surgery date of course we go in the day before to get him checked in and prepped, the day of the surgery they came and got us we walked down with him and when we gave him over to the surgery team it started to hit home what was happening,
There was a catholic priest that prayed with us for a while and then we checked in to the waiting room area. We had a little room that had a door that connects to the hall way to the surgery center, they gave us updates every hour on the hour all day long, I think Velinda got mad at me during this time because I slept during most of this time and would not tell her much of anything all day long. Raymond’s surgery was 12 and a ½ hour long; he was on the heart lung bypass machine 11 hours. He went straight into ICU after wards. that evening we got lucky and had a room at the Ronald McDonald house and she asked me how I could sleep when Raymond was in surgery, I told her that when you have a dream you want to come true, you don’t tell any one about it, and when you have a dream you don’t want to come true you tell everyone about it. well I finally told her of my dream I wanted it to come true, and surprisingly she said she had the same dream but she was too upset to sleep. After that night we spent the next seven days in ICU with Raymond, we could not sleep in the room but we could sleep in the waiting room at night. During this time, we learned how to care for him and how to pick him up to hold him, we also witnessed the power of touch and being around other people and the healing effect, this has on people that are ill. There was a little Hispanic girl in the next room, her parents had one vehicle and both parents worked so when they came to visit it was usually around 11 pm and they stayed 30 minuets to an hour each evening, the little girl went into cardiac arrest 3 times before the ICU administrator approached us, they wanted to know if they could move the little girl into Raymond’s room since we werethere all day long. they told us we could pick her up and hold her or we could just talk too her and maybe touch her to let her know someone was with her, so we did and in the evenings we would let the parents have time with their daughter without us in the room, come on this was usually around 11 pm to midnight so we were usually trying to let Raymond sleep any way. well with this human touch the little girl came around and started to improve and when we moved to the 15th floor the little girl was moved the same day so she was on the way to getting out as well.
When we moved to the 15th floor we went through 5 days of training on how to care for a heart patient and change dressings and general care before we were discharged, for 15 days TCH was home.
Now that we have had one surgery the next surgery date has been postponed since last February, Raymond is below weight and they need him to gain 10 pounds just to make it through a next surgery of course should something happen in the time being I’m sure they would do what is necessary. Raymond is 4 years old and started Pre-K this year we are now teaching the school district how to care for a Heart Child and the restrictions placed on him by his doctors. The ONE greatest fear I have is running out of insurance in the future, his heart condition is not a fear it is something we live with day to day and each day we have him is a blessing…
Raymond’s diagnosis after surgery was DORV, TOF, PDA, VSD &
Today Raymond has overcome a lot of obstacles, his heart condition remains somewhat stable but the other diagnoses are continuing to rise so far, he has- Epilepsy, celiac disease, migraine headaches, seizures and Asperger’s syndrome. But we take one day at a time and live life to the fullest.
Raymond is now 15 years old and we have given up on the school district and have been Home Schooling now for the last 5 years.