To w.G. Writer:
my son's diagnosis is hypo-plastic right heart, tricuspid astrisea with a.S.D. (Atrial septal defect). When he was first born i was told his pulmonary artery was large enough so he would not need to have this first surgery. This "first surgery" was explained to me to be the b.T. Shunt. No one ever mentioned a banding until he was about 7 days old. By the way, jack was born over the memorial day holiday so most of the doctors were not available. During his first week of life jack's condition was very good. He was not even on o2. Then it seemed as soon as the doctors returned to work after the holiday jack's conditioned worsened, or in their opinion it did. However, his vitals, pao2, everything that was monitoring him the week prior was the same. The thoracic surgeon was sure he was going into congestive heart failure.
Please keep in mind, i am at their mercy and have no choice but to believe in these people caring for my son. The day of the pulmonary banding was awful. The surgery took a very long time and didn't go very well. Ever since that day jack's condition deteriorated. He started having episodes of clamping down when he was upset. His saturation was supposed to be in a range of 75 to 85. His would drop to 60, sometime even lower. Every breath he took he retracted. Before the banding this never occurred. When the surgeon explained this operation to me he said he would place the band on loosely so jack could grow into it. It was supposed to last 4 to 6 months. His lasted only 4 weeks and each day it was on he nearly died. I kept insisting that something was very wrong and finally they agreed to perform a heart cath because they believed a hole in his heart might be closing and this procedure would correct his problems. Well, the cath was done and again jack nearly died but it did nothing to relieve jack's problems.
We stayed in this hospital 3 months, jack's episodes continued on a daily basis. One morning, much to my surprise jack's doctor informed me we were being released. I was scared to death. Even on the day jack was released he again had another episode. We were sent home on o2, propranolol, digoxin and lasix along with a few reflux medications. Everyday we were home he would have these terrible episodes where he could not breath. His nail beds hands and feet would start turning blue. His legs would start modeling, finally he would become so exhausted his eyes would roll back and he would just pass out. I would hold the o2 over his nose and mouth and as he relaxed his o2 level would come back up and he would go to sleep. We went through this every day we were at home. Within 10 days we were back at the hospital. That night jack coded and he underwent an emergency surgery to remove the band. Removing the band did help some, but the scar tissue where the band had been still blocked enough blood flow so that he still had severe difficulty breathing and his pao2 was dangerously low.
We were so scared of the doctors and staff at this hospital i ask to be transferred to childrens hospital in arkansas where he had his glenn shunt. Now, jack is doing much better compared to his condition before. Karen