Dante's Heart

We have been trying to keep an eye on Dante's Atrial Septal Defect (ASD) and last March he had an echocardiogram to try to determine the size of the hole.   We were able to come to a few conclusions that day:

1. Dante's vocal chords and lungs are healthy.
2. Dante is able to physically express irritation and annoyance.
3. We needed a sedated echocardiogram if we wanted to know the size of that hole.

Today we went to the UMass Medical University Campus for the procedure.  It took some time getting him sedated, first with a liquid and then an IV to administer the rest.  Thankfully we bought him an iPad some time ago and he absolutely loves Starfall.  I am used to having to hold him during blood draws, so it was harder for me to see him suddenly go limp then it is to hold him kicking and screaming.

Dr. S is wonderful, and was able to do everything he needed, including an EKG.  Dante does indeed have a hole large enough to recommend repair.  I carry a notebook with me to all of his appointments, and when Dr. S started his explanation I was about to start taking notes. Dr. S instead took the notebook and drew me two diagrams and wrote notes for me as he explained it!! Here is the same explanation he gave me.  The hole is having no detrimental effects on him now, although his right ventricle is enlarged.  However it is the possibility of some very bad long term problems that cause us to want to have this fixed now.  Later would very likely be too late.

It was recommended that we take Dante to Children's Hospital Boston to have the catheter procedure done.  The US News rated Children's Hospital Boston as number one in the nation  for cardiology.  It is only a little over an hour away, and Dante has even been there to the Down Syndrome clinic so I know where to go.  I was told to expect a phone call within two weeks to discuss the timing and plans.  We expect to be in the hospital for only one night.  That is much better than up to a week if it was surgery being recommended. 

I am very thankful for the wonderful doctors and nurse that took care of Dante this morning, and thankful that we have the nation's top experts so close by to continue to help him.