Stage II

This morning Paige & I had our "care conference" with 10 doctors and nurses to hear what the full cardiology department at Children's Mercy felt was the best course of action for Henry. Henry's surgeon came right out and told us that they think the second surgery for HLHS - the Glenn procedure - is the best choice for him, and that they will do it within the week. This was wonderful news, but it took Paige and I almost entirely off-guard. First, we thought if Glenn was still on the table, we would be told that Henry would need to wait for some undefined period of time before he would be ready for it - essentially, "wait and see". The other reason it came as a surprise was that we had fully braced ourselves for the transplant option.

That is the main reason we have not updated everyone for over a week. Last Wednesday, we made an extra trip to Kansas City to have an introductory meeting with the Heart Transplant team. Henry's status had not degraded, but there was still a lot of concern over whether or not his heart was strong enough to do the Glenn. As we spoke with the transplant team, it was becoming more obvious to us that the doctors were leaning that way. We have spent the past week grappling with whether or not we wanted to hold out for the Glenn or if we felt we were ready to open the Pandora's box that is heart transplantation.

Thankfully, we don't have to make that decision just now. Henry is set to have surgery next Tuesday, the 14th. This is excellent news, but it really just tells us which obstacle course we will be running next. There is still a lot of concern that Henry's heart is not functioning as well as they think it should be, even with all of the support he is getting. Part of the surgery will involve stopping the heart for 15-20 minutes or so, and this is riskier than it sounds given his function. We believe the surgeon would not commit to this unless he truly felt Henry can pull through, but we will have to wait and see.

We will pass along some more information in a few days about Henry and what lies ahead for him and us. For now, we are going to enjoy a day with good news.