Aidan was discharged only 3 days after his surgery. During the stay we experience dangerously high blood pressures and a pneumothorax. A pneumothorax and uncontrolled blood pressure... yet the doctors and nurses seemed most concerned with the fact that my 2 year old still had a pacifier? Well, let's see... a 2 year old that was not allowed to eat or drink anything for nearly 4 days, had to wear Oxygen via face mask to try and correct the pneumothorax, and just had HEART SURGERY.. and you are concerned about his binkie? Needless to say the "you need to get rid of the pacifier" comment got old REALLY fast. But Aidan was a trooper. Aside from asking for water, he was a perfect patient. He must have watched "Polar Express" a dozen times, but he was perfect! I think my child may be the strongest kiddo in the world.
Where are we today?
During our initial follow up visit with the cardiologist, the physician noted a "strong gradient across the incision site." What does that mean? Well.. as I understand it, the surgical site has developed a "significant amount of scar tissue." This means that Aidan's aorta will not be able to grow as he does. The scar tissue will prevent the artery from growing, which means that there are more heart surgeries in our future. Heartbreaking. How could this have happened? One of our main concerns when deciding to have the surgery, was whether or not Aidan would develop scar tissue that could potentially lead to further complications. We were assured that the surgical approach used would leave little to no scar tissue and this surgery is typically a "fix all." I have never felt so disappointed. I put my child through a serious heart surgery with the belief that it would be a one time thing, and I was wrong. To top it all off... the doctors failed to perform an important diagnostic procedure to evaluate Aidan's Mitral valve.
So here we are. Significant scar tissue at the surgical site. Un-confirmed mitral valve diagnosis. And no clue what to do next... so we go back to square one. We have decided to switch providers, and will now be seeing a cardiologist at Valley Children's Hospital for a new evaluation.
I started this blog thinking I would only need it for a short period of time, in order to keep everyone informed of Aidan's ONE surgery. I guess I was wrong.
Thank you to everyone who posted, sent texts, emails, prayers, and happy thoughts.... This journey is far from over and I am forever grateful for my family and friends who have supported and continue to support us. I love you all.
