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Matthew Jon |
Our excitement and delight soon became sadness and distress. The pediatrician said that Matthew turned "blue" in the nursery and some testing needed to be done. After blood work, a spinal tap and then finally an x-ray, it was found that our son, who was only a few hours old, had an enlarged heart. The doctor then called a NICU facility that was an hour away to come and transport our baby to their hospital. At midnight, an ambulance took Matthew away. During those early hours of Christmas morning, we called the unit to see how our son was doing. After some more testing and a catheterization, Matthew was diagnosed with Transposition of the Great Arteries. A septostomy was done to create a hole in his heart to allow for better blood flow.
Christmas Day afternoon was to be celebrated with family, but instead we traveled to go see our chronically ill newborn son in a hospital's NICU with many wires and machines attached to him. We spoke to a pediatric cardiologist and a surgeon. Matthew would need open heart surgery as soon as possible. The surgery, which was the Arterial Switch procedure, was done 5 days later on December 29th. The hole that was created a few days before was also sutured closed. There were complications during the surgery. After 13 hours in the OR, he was taken to the cardiovascular ICU with his chest still opened due to excessive swelling. The heart was covered only with a Gore-Tex patch. There was excessive bleeding and Matthew was having seizures and possibly there would be some brain damage. On New Year's Eve, we were told if we wished, to have our baby baptized. The doctors did not think our son would make it through the night. There were many people and communities praying for Matthew and we will never underestimate the power of prayer, for our prayers were answered that night. The care he received from the nurses in the CVICU was absolutely incredible. We believe our "Christmas Miracle" held a special place in their hearts as well as in ours. We can honestly say that through their dedication, hard work and loving care our son is alive and with us today.
Ten days after surgery, Matthew was brought to the pediatric intensive care unit. It was here that we would stay for the next two months on a CHD roller coaster ride. Matthew was unable to come off of the respirator. Every time they tried to extubate, a few hours or minutes later he would need to be re-intubated. It was back to the OR for a placation of the diaphragm muscle. Soon after this surgery, Matthew was able to breathe on his own without any machines. It was around this time a VSD that went undiagnosed was found. No procedure was done to correct this VSD. Because Matthew was intubated and extubated so many times, or perhaps a nerve was nicked during a surgery, Matthew had no voice. Later it was discovered that he had vocal cord paresis.
Once extubated, we graduated to the next unit which was the pediatric floor. Here we had some feeding issues and Matthew was diagnosed as failure to thrive. Two long weeks of trying to get Matthew to eat and gain weight, he slowly improved. 75 days after birth, he was finally released from the hospital.
At home, Matthew was receiving occupational, physical and speech therapy. These services were provided by our county and were available to us until Matthew started school. When he turned 15 months old, scar tissue had developed, which caused some pulmonary stenosis. We were told that this is a common complication with the arterial switch operation. So we went back to the hospital for a valvuloplasty. The procedure was not very successful. At this time we were told that an ASD was found. For four years after the ballooning procedure, we had regular pediatric cardiology checks. The doctor told us that he was not overly concerned about the septal defects and was more concerned about the pulmonary stenosis. We moved to another location in our state and made an appointment with a new pediatric cardiologist. It was then that we were told that Matthew's heart was slightly enlarged and he would need to have these two septal defects (holes) closed. We looked for information about device closures, much of this information we found on the C.H.I.N. site. We took Matthew to a heart facility out of state where they were performing such procedures. We were told that Matthew was a good candidate for a device closure. The morning of the scheduled procedure, a transesophageal echo was done. To the pediatric cardiologist's surprise and ours, the ASD was a sinus venosus type, which was approximately 30 mm in size. Due to the size and location of the defect, it could not be closed with a device. The VSD was 13 mm. The roller coaster ride continued with another trip to the OR for a second open heart surgery for Matthew. The VSD was sutured closed and the ASD was closed using a patch. We feared we would have another terrible experience as we did with his first open heart, but this surgery was textbook with no complications. We were elated and came home only 4 days later!
In May of 2002 it was discovered that the VSD reopened and it will probably need to be closed again, but at this time it is not causing any problems. Today, Matthew is doing very well and likes being a Webelo Scout. He receives special education classes at school and works hard in all subjects. He always makes us laugh and brings us so much joy. Matthew will be celebrating his 10th birthday on 12/24. We are truly thankful for our Gift from God and Christmas Miracle.
