Real live family- The Debono Six

January is cardiology month for us. Josh is great and he considers Mott hospital "my hospital". More like he owns it than he needs it. He had an ekg and an echo.There are essentially no changes. He is 40 lbs and 45 inches tall. He is thin and healthy! Dr Russell is really good with Josh and with Ron and I. I love that he answers my questions before I ask them.

Josh is in great shape. They were pleased that the echo appears stable. Functionally he is doing great. He is high energy and has never self limited his exertion. He eats like a truck driver and is learning well in preschool.

The gray area centers around his pulmonary valve. He has a trans-annular patch across his pulmonary valve so the valve was sacrificed during his surgery in 2007. He has lots of back flow through the valve back into the right ventricle. Eventually he will need to have this valve replaced.

The good news is this week, the FDA approved a device that is used to do pulmonary valve replacement through heart catheter procedure. This is big! if they perfect this technique, it would mean an overnight stay and sedation instead of open heart surgery! (we've been there before, and if possible would rather not go back!) Right now, it can only be done via catheter if people have a man made outflow track. Josh has half natural and half man made. If we play our cards right, he will not need a valve until the procedure can be done with his type of outflow tract.

The decision about when this valve replacement should take place is based on clinical condition and echo and MRI findings. Within the next year or 2 he will have an MRI to take these measurements and we'll see how he continues to do clinically.

For now we CELEBRATE!