We had Parker's echo yesterday and by the grace of God he cooperated. he woke up, but was able to be distracted by playing with the wand of the machine (a $15K toy) and the wires to the sensory pads on his chest. The technician was terrific; she was quick and able to capture all the pictures needed. We were able to confirm that his VSD hole has closed completely (Praise God)! So, the diagnosis has changed to be called a transitional AV canal defect. The Dr. was still unable to definitely commit to his surgery on July 20th. She needs to consult with the surgeon and other Cardio Drs who have patients with Parker's diagnosis that did not have their mitral valve repaired. We are blessed that Parker has a unique form of AV canal defect. In his case, he has no pulmonary damage and his one valve is working perfectly. The Dr. drew Mike and I another picture and walked us through things again which was very helpful. Parker has one "tube" (for lack of a better word and makes a better visual in my mind) where we normally have two "tubes". Inside of these tubes we have three leaflets on the left and two on the right. In Parker's case he has five lealets in one tube. They all work perfectly and close tightly, but we don't know how this defect will affect him long term. The fact that his VSD is closed makes the surgery "easier" while still amazingly delicate. Parker does have two small holes above this area too, but those are not of concern. If his mitral valve did not have the defect they could close the two holes with a cath procedure instead of open heart surgery. The big question is "will surgery improve Parker's quality of life." Or "make any difference?" He is completely asymptomatic and thriving, so you can see how all of us are puzzled. We love our Dr., she is doing all the things one would want...including calling retired cardio drs that have older patients to see their perspective and outcomes.
So, we are still in "limbo." The Dr. thought she would have all the info at the latest next week. She was hoping to talk to the surgeon today. Pray for a definitive answer back from the Drs and that Mike and I will know without question how to proceed. For now, we focus on Parker's birthday and anticipate God's best!
1 month ago