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| Kyle and his brother Brendan (2007) |
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| Kyle (2006) |
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| Kyle's First Birthday (May 2005) |
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Kyle (March 2005) |
The second month was another story. He began having a difficult time eating and sleeping. After trips to the pediatrician, Kyle was said to be suffering from colic and we simply switched formulas. By his second month, he had tried 5 different formulas. I continued to visit the pediatrician and she never detected any other complications or heart murmur, giving us no reason to believe it was anything but colic. He continued to struggle during his feedings and his sweating became more severe.
Everything changed one day when he vomited for the first time after a feeding. I also noticed his breathing was labored and was now really worried. We took Kyle to urgent care that night and the doctor there believed Kyle had a flu virus but because of his labored breathing, ordered a chest x-ray. The results showed that Kyle's heart was very enlarged and they wanted to admit him right away to be seen by a cardiologist. That night in the hospital, Kyle continued to vomit and wouldn't take any formula. They placed him on an IV and we tried to get some sleep, still not thinking anything serious was wrong.
The cardiologist, Dr. Farooki, came in the room at 5:00 in the morning. He barely said hello to us and went straight to Kyle's bed to begin his echo and EKG. He began yelling at the nurses and other doctors about how Kyle should be in ICU and not a regular hospital room knowing how critical he was. My husband and I stood in shock. Finally after the initial exam, Dr. Farooki quickly diagnosed Kyle with ALCAPA. He said that Kyle was very ill and needed surgery right away. He tried to quickly explain the diagnosis as chaos erupted in the room. I don't think I really heard what he was saying at the time. Everything was a blur. The only thing I remember hearing was that Kyle probably would have only survived a few more days. We would need to be transported to Children's Hospital.
We arrived at Children's Hospital about an hour later and were given a room in PICU. Within an hour, we got a visit from the cardiac surgeon, Dr. Walters. He wanted to be exactly sure they had the right diagnosis before surgery, so he was ordering another echo and EKG. The results didn't come until later that day. Dr. Walters confirmed the diagnosis but still didn't want to proceed with surgery for 3 days. Those were a horrible 3 days. I was initially told my son wouldn't survive a week, and now we were waiting 3 more days to do the surgery! I don't know how we made it through.
Finally, the day of surgery was here (August 30th). It was almost a relief. I couldn't bear to sit by Kyle's bed any longer knowing how quickly his heart was failing. Dr. Walters explained the procedure and we were told that we would be updated at every major event. We spent that long day in the family waiting room. The surgery took over 8 hours. Kyle spent over 5 hours on bypass. Because his heart was so enlarged, they decided not to close his chest. We were told that ECMO would always be an option, but at this time, Kyle seemed to be doing well on his own and it wouldn't be necessary.
Kyle's battle after surgery was filled with ups and downs. He spent his first 2 weeks on the ventilator as the 16 IV medications were slowly weaned. His chest was closed 8 days following the surgery. We had one awful night when his blood pressure was extremely high and they believed that he would have to now be placed on the ECMO machine. They even made the call to the surgeon who does it. I will always remember one doctor, Dr. Mary, who wanted to try one other medication before proceeding to ECMO. The medication worked and stabilized his blood pressure and ECMO was not necessary. Needless to say, aside from Dr. Farooki and Dr. Walters, I believe Dr. Mary helped save Kyle as well.
They attempted to extubate Kyle about a week later, but with no success. He was re-intubated and we tried again to be positive about the setback. We were told about the rough road after surgery, but I never expected anything like this. As Kyle gradually improved, they decided to extubate again. This time was successful. At this point, I finally felt that things were going to be ok and Kyle would be coming home soon. About a week later, Kyle crossed the hall to the stepdown unit. We spent a few days there and were told we could go home. I was extremely hesitant and scared, but after almost 40 days in the hospital, we were ready to be with our oldest son, Brendan, and be a family again.
Today, Kyle is 10 months old and doing well. We see a cardiologist every 3 months right now and Kyle is still on enalapril, digoxin, and aspirin. His gross motor skills are improving. He is now sitting up on his own and beginning some solid foods. He is beginning PT and OT as well. Due to his long hospital stay, his head was left quite misshaped. He is now wearing a helmet to help reshape his head. We hope to be done with that in a few months. We are so thankful to our family and friends and to all of the medical staff involved in Kyle's diagnosis, treatment, and continuing recovery. We truly consider Kyle a blessing to our family.
September 2005 Update
Kyle is now 15 months old and continuing to keep us on our toes. He has come a long way in the last four months. He is now standing and beginning to cruise around the house. He has been working hard in PT and OT every week and will soon begin his speech therapy. We just visited his cardiologist this month and were told that Kyle will need to have another procedure to correct his supravalvular pulmonary stenosis. Today, it is not at the point where a repair is necessary. As with many CHD patients, we just have to wait and see how long he can go without it. He is such a happy baby. No one would ever believe he's been through such an ordeal in his first year of life. We continue to count our blessings each day.
March 2006 Update
It's been almost 5 months since our last update on Kyle. He is now 21 months old and such a typical toddler boy. He is doing really well and continues to get on track developmentally. We have finished OT, taken a break from PT to practice our walking, running, etc., and began speech therapy. He is picking up quite a vocabulary on his own. His nightly rituals include laying in bed and listing off all of the words he knows, as well as his animal sounds.
It's been a typical flu season for Kyle. He's had his share of colds and just got over RSV and Bronchiolitis. Any type of respiratory virus gives us quite a scare. He is incredibly strong when it comes to getting a virus. He just had his last appointment with his cardiologist in February. Thankfully nothing has changed. His ejection fraction and ventricle function are good. The concern with Kyle is his supravalvular pulmonary stenosis. His PS continues to stay at 30mm and we will wait to see if it reaches 50 before talk of another procedure. Everyone is very pleased with his progress. Thanks again to all of our family and friends who continue to ask about Kyle's progress and offer support. And thank you to TCHIN for giving us a way to share information with our loved ones and talk to other families who face the challenges of congenital heart defects.
March 2007 Update
A year has gone by since our last update. Kyle had his most recent appointment with his cardiologist in February. I am pleased to say that nothing has changed. His ejection fraction and ventricle function are still good and his pulmonary stenosis remains at 30.
Since Kyle's surgery 2 years ago, he has had episodes at night when he coughs and cannot catch his breath. Six months ago, his pediatrician diagnosed him with asthma and he was put on a number of medications. The breathing episodes continued and they decided to send Kyle to a pulmonologist. He is currently waiting to have a bronchoscopy performed. They now believe that the episodes aren't triggered by asthma, but maybe there was damage done when he was intubated during his surgery. Kyle was intubated twice and the second time was an emergency and they had a very difficult time doing it. I am hoping that the bronchoscopy will finally give us an answer and it will be something that can be repaired.
The last year has brought enormous changes in Kyle. He has come so far physically, mentally, and socially. He is extremely energetic and a very funny little boy! He is constantly making me laugh. He loves playing with his brother and his friends at school. Another year has gone by and I still consider myself the most lucky mother in the world!
August 2007 Update
Kyle is now three years old and doing well. His last bronchoscopy revealed that he has tracheal malasia. The doctors believe that prior to his heart surgery, he struggled with breathing which weakened his trachea. He is also being closely watched for his Asthma and is great about taking his daily medications for that too. Kyle has started preschool and absolutely loves it. He has lots of new friends and enjoys anything that has to do with cars and trucks. He also loves to play with his big brother Brendan. He now sees his Pulmonologist regularly and we will go back to the cardiologist in January. He is the funniest little boy and brings so much joy to our entire family.
April 2008 Update
Kyle just had his annual appointment with his cardiologist. I am happy to say that Kyle has remained stable in the last year. We endured quite a few battles with pneumonia, but he pulled through like the trooper we all know he is. Like many CHD patients, Kyle's growth has been relatively slow. Because he hasn't hit any major growth spurts, the man-made tunnel put in during the open heart surgery, is still functioning well. His cardiologist, Dr. Cohen, believes that we have a few years until another surgery is needed. Everything else, including the asthma and tracheal malasia is under control with medication.
Kyle is thriving in a new preschool. He loves to play with his brother and his cousin Abbie. It's hard to believe that we will be celebrating his fourth birthday soon! Time flies and we will enjoy every moment of it!
