Carson's Story

My Miracle Boy

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After trying to conceive for many years and one failed marriage I had almost given up.  But after finding a new love and being married for only 8 months I was pregnant with no drugs or Dr’s help.  We were very excited to say the least.  I didn’t plan to find out the gender so that it could be a total surprise.  I was 31 years old and considered high risk.  I was ordered at 20 weeks to have a level 3 ultrasound.  During the visit we were told that our baby could possibly have a heart defect.  We were asked to return the following week so that a pediatric cardiologist could make the determination.  During the week of waiting we felt that we needed to know who we were praying for and couldn’t wait to find out if it was a girl or boy.  We returned for another ultrasound and devastated does not begin describe how we felt when it was confirmed that our baby had a condition called Tetralogy of Fallot.  One well known identifying characteristic is called a “blue baby”
It was explained to us that our baby would need a series of surgeries but the problem could be fixed.  We were also told that he could have learning disabilities as well as other possible birth defects.  It didn’t matter to us.  We really hoped that they were wrong and that everything would be “normal”.  The good part to the visit was when they said “It’s a BOY!"
I was induced three weeks early so that he wouldn’t be big and have as much stress during delivery.  After 3 days of meds and all my family waiting near by he arrived.  Our baby boy Carson was whisked away within minutes of being born.  The cardiologist was ready and waiting to take care of him.  At five days old he underwent open heart surgery and received a shunt (to increase blood flow to the lungs) which would get him by until he got bigger to undergo extensive repair surgery.
 
Miraculously he fed from a bottle within a few days after the surgery.  Babies often are stubborn feeders unless they start shortly after birth. We took him home at 13 days old.
At 2 months old it was determined that he needed to have his surgery, there was not time to wait.  The shunt was no longer doing its job.  He was also put on oxygen 24/7 until surgery.  We had to take him for his major surgery much earlier than expected.  

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Tetralogy of Fallot 

Tetralogy of Fallot refers to a combination of abnormalities with four key features: 1) A ventricular septal defect (a hole between the ventricles) and 2) obstruction of blood flow from the right ventricle to the lungs (pulmonary stenosis) are the most important. Sometimes the pulmonary valve isn’t just narrowed but is completely obstructed (pulmonary atresia). Also, 3) the aorta (major artery from the heart to the body) lies directly over the ventricular septal defect and 4) the right ventricle develops hypertrophy (thickened muscle).

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At 13 weeks old the surgeon opened him up again to patch the hole in his heart.  Following the surgery there was so much swelling they could not close his chest.  After 5 long days they closed his incision.   After days of difficulty getting him to breath on his own, it was determined that he had nerve damage to his diaphragm.  His right lung was collapsing without the diaphragm functioning properly.  During the critical days of healing Carson had a seizure.  And the MRI’s and CAT scans began.  To all of our surprise, it was determined that Carson had a stroke many weeks prior.  The clinical diagnosis is that it had happened in-utero (while I was pregnant).  Neurologists said that a major portion of his brain was damaged and deteriorated.  The good thing is that looking at the scans was totally different than looking at my baby.  They didn’t think that my boy didn’t look or act like the child with such a history.   With great caution, another surgery was done to hold his diaphragm to in a constant position.  We waited again for him to get strong enough to breath without assistance from a ventilator.  Finally after several days and many tests he was ready.  Then the next task was feeding him by mouth.  This is a challenge when so much time has passed without regular feeding.  Regretfully he was not strong enough to eat much more than an ounce or two without difficulty.  During the night he spit up, aspirated the formula and stopped breathing.  He was resuscitated and immediately placed back on the ventilator.  We were told that he needed a surgery to keep this from ever happening to us at home.  A few days later he underwent another surgery to tighten his esophagus and surgically place an external feeding tube into his stomach.  It was explained that we could use the feeding tube until he was strong enough to eat on his own.  After more healing and being fed by tube he was stronger and getting ready to go home.  This was the longest nine weeks of our lives. Taking him home without a watchful eye of a full time nurse and all the equipment to alarm us of any trouble was a very scary undertaking.  But with 13 prescriptions and new monitors and equipment for home we took on the task.  Carson was on several meds for his heart, some for his stomach, some for seizures, blood thinners and some for asthma symptoms.  During his stay at the hospital, this new Mom became an amateur nurse and respiratory therapist and much more.  The baby monitor to me was way more valuable than it is to most parents.  It was my alert to his oxygen saturation monitor and formula feeding pump alarms during the nights.  His baby room looked more like a hospital room.  To most people all of this was intimidating but to me it was what we had to do.I was allowed to take time off work for sixth months from pregnancy to a few weeks after he was out of the hospital.  Luckily my parents were willing to leave So. Utah, to come stay with us for a month or so after he came home from the hospital.  My sister in law happened to move to Vegas and luckily took on the role of nanny to our fragile baby.  After about a year we had a nanny or a nurse at our house while we were at work.  One person could not do it all.  The hours that I was away from the house were longer than one person could cover. After coming home from the hospital he had to been seen by Dr.’s 2 and 3 times a week.  This slowly turned in to once a week, then once a month.  My calendar was my diary. Some of the hardest times were the appointments to take blood to check his blood thinner level.  He was very difficult to draw blood from.  I cried and got mad at the staff many times when they had to make several attempts.  Luckily we finally saw a specialist in California who determined that he did not have a blood clotting disorder and could be taken off blood thinner.   During his first 2 years of life, Carson was on oxygen 24/7.  We were unable to travel or take him in public.  Where we did go, we had to take oxygen tanks as well as feeding supplies and meds.  We were persistent with getting Carson to eat by mouth.  He slowly but surely started to eat and drank very little from a sippy cup.  His nutrition was supplemented with the tube feedings during the night.  At age 3 Carson was on oxygen only at night and we had weaned him off the tube feedings completely.  He learned to walk just after he was 2 and he could say just a few words at age 3.He has had more x-rays than anyone I’ve known.  He has had a heart catheterization procedure many times.  This is where they go through an artery and a vein at the groin.  They have been able to do more repairs inside such as balloon the arteries and eliminate unwanted collateral veins.  But most of all this procedure tells us exactly how his heart is functioning. Carson went to a close family friends’ house for daycare at age 3.  He also was enrolled in Early Child Education with the School District.  He still receives special services today.  It has been difficult over the years to find an in home babysitter that would take the extra care that he requires.  Each year gets easier. In June of 2009 Carson had another open heart surgery.  He received a donor pulmonary valve.  For the first 6 years of his life he managed without one at all.  This is said to be the last expected open heart surgery.  It thrilled us beyond words that he was released from the hospital after 5 days.  He is active and doing great.  He has no restrictions. Through all of his years we have had excellent insurance coverage.  The hardest things are all the many mysteries to caring for a child with special needs when nobody knows the answers.  There is always the question of whether we are doing the right things.  Our insurance coverage comes from my job.  If I didn’t work, I could do much more for him such as taking him to physical therapy or help more at school.  I use most of my time off for Dr.’s appointments and times that he is at home sick.  My husband works in the construction trade and does not have a set schedule or vacation time that would allow him to be consistently available. Carson is a very lucky boy who has endured plenty.  He is in great health but he struggles with the affects from his stroke and his asthma.  He has a hard time fitting in to some social situations.  He will always have a weakness on the left side of his body.  He loves sports so this can be frustrating at times.  He takes it all in stride and does his best.  I’m sure it is harder for us than it is him. We are so thankful that most of his needs have been met right here in Las Vegas.  We were fortunate enough to have come in contact with so many wonderful specialists who played a big part in his life.