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Richard (Alex) |
Alex was immediately transferred to a children's hospital to be stabilized. I was still recovering and did not get to go with him.. and worst of all, I had not even seen him because I was still out from the anesthesia. At children's they did a number of tests and I was truly grateful for the nurse's there.. since I was still in the hospital they called me every hour to let me know how Alex was and also e-mailed me a picture so I could see him. They were wonderful.
Finally the news came.. after all the tests. They said that when the doctor would release me that we could come down and they would tell us the outcome of all the tests they had done and they would discuss our options.. Those few days were very hectic for us.. When we got there we sat down and they told us that they found that Alex had 5 heart defects and they were severe. 1) Transposition of the great arteries 2) inversion of the ventricles 3) complete heart block 4) Ebstein's anomaly 5) tricuspid valve insufficiency. They told us that with all of his problems he would not see his first birthday. They asked us if we wanted to take him home or said that it may be better for him to stay there where he could get the best care.
When Alex was 4 days old we took him home.. We felt it was best for him to be home with us, his brother and his grandparents. After we got home we found a great pediatric cardiologist that was near to home... and he promised us then that he would do everything he could... but also told us that he was not a miracle maker..
As the weeks went on Alex struggled. He was not gaining weight and the cardiologist was worried. We decided to do a cath. After the cath they decided to place a dual chamber pacemaker. Alex was just over 6 weeks old. We brought him home once again when he was 10 weeks old. Throughout the next few months we were hospitalized several times for failure to thrive, RSV and pneumonia. When Alex was 6 months old they said they would have to cath him again.. he was always sick and he just was not growing and worst of all he had been in heart failure for almost a month. They cathed him and said that the leaking of the valve had grown worse. They said our only option was to get him healthy and replace the valve. It seemed like forever but finally in June they decided that we could wait no more and replaced the valve.
Alex thrived with his new valve. He grew and played with his brother and seemed like a new boy. Alex still went in and out of heart failure but all in all he seemed to be doing well. He continued to do well for a little over a year and a half, then he just got really tired. His pacemaker battery had was dying so they replaced it and we were off and running again. When they replaced the pacemaker they decided to leave the original lead wires because they seemed to be in good condition and they were worried about having to replace them due to all the scar tissue that was surrounding them. In April of this year they replaced one of the lead wires after it broke in his chest but he has done well.
In may I started noticing changes in Alex.. I called the cardiologist who said he was probably coming down with a virus so I took him to the pediatrician who did every test she could think of, looking for a virus, and found nothing. So we went off to the cardiologist. They stuck to their opinion that it was just a virus and sent us home. We made several more trips down and then finally ended up in the emergency room. The doc in the E.R. did some more tests and finally came back—Alex had gone back into failure. They called the cardiologist and started Lasix once again and the cardiologist said that it was probably due to the valve. So they scheduled another cath which showed that the valve was leaking. I asked what next, as if I didn't know. They discussed all of our options and we decided the best option for Alex was to replace the valve. Surgery is scheduled for August 20.
Alex has done much better than anyone hoped for him in the beginning. They said he would not see one, and five days after his next surgery he will turn five years old. He is such a great kid. He runs and plays and, unless he shows you "his battle scars" as he calls them, you would never know he that his is a CHD miracle.
Thank you all for taking the time to read Alex's story. I have enjoyed the lord allowing me to be a part of it.. I would not trade him for the world. We have met some really terrific people and I have discovered that it takes special people to care for these kids. If you, like me, are a parent to a child with heart disease, I commend you, because that means you are a very special person that God called to do a very special job. That is to take care of and raise a child with heart disease, be there for their good times and struggle with them through their bad times.
God Bless you all.
