OK, here is the update from the cardiologist appointment today. There is so much information to share I don’t know if I can get it all down at once or not, but I will try. Let me start with the basics:
We got to Little Rock an hour and a half early for the appointment so we ate lunch at the hospital cafeteria. As soon as I started down the hall to the cafeteria I was hit with the familiar food odors. I think at any time I could have sat down and bawled, but I tried not to concentrate on it. We ate and then headed back to check in at 1:30. They didn’t have us on record in the system, so they called the nurse and she came right out and told us the doctor would see us in his office. It was nice of him to think of how hard it might be to come back to the clinic. We met him on the way to his office and he sat down with us right away. He had Emma’s picture I had sent him on his desk, which meant a lot to me. So then we got down to the questions I had.
There is a lot of information given for those questions so I will try to cut it down some. Basically we went back over Emma’s different diagnosis as far as her heart was concerned. I had been confused on whether Emma’s case was so different that they had never seen it before, and he explained that they understood all of the different peices of Emma’s condition, it was just the way that they somehow affected her together that they didn’t understand. Basically he said that Emma didn’t follow the script. He really thinks that her spells could have been originating in her brain. So her neurological condition, which we definitely didn’t understand, may have had a lot to do with her overall condition. We went over in detail the one thing I had been really wondering about-the pulmonary vein stenosis. In my subsequent research I had seen some pretty negative outcomes to that diagnosis. But he said that he really didn’t think it was the ultimate cause of death, mainly because it couldn’t have progressed that quickly from the last time he had checked her heart. But it was a problem that could have eventually become life-threatening from what I understand and does not have many successful options for treatment, especially for a baby like Emma. He said that if years down the road he learns something new that will make some more sense out of Emma’s case, he will let us know.
Other than Emma’s health issues, we discussed the possiblity of this happening again with other children and he said he didn’t expect it to happen again. He bases it on the fact that it was such a rare case, and that the one thing the geneticist said to look for in other babies (the abnormal pulmonary venous return) he has never seen repeated in other family members. So that is definitely encouraging.
He gave us two very nice complements that were good to hear. One, that he thought we were excellent parents and should have more children. And two, that everyone that cared for Emma had been blessed through the association with us. John and I talked about this after the appointment. We said we didn’t do anything special in our dealings with the doctors. Basically we did all we could for Emma and trusted God with the rest. It makes me wonder what is the norm in dealings between doctors and parents.
Thanks for all your prayers concerning this consultation. I don’t think it could have gone better. A few tears were shed on my part, but I never lost it, which was good. I guess one thing I regret is that I was trying so hard not to cry and focus on it, that it wasn’t as much a good-bye as I had wanted it to be. If I had it to do over again I think I would have gone to one of the few spots I had found on the hospital campus where you can have some resemblance of privacy and cried my eyes out and prayed, but oh well. I hadn’t posted this yet, but I had really been holding on to the interaction with the hospital and doctors as if I could hold onto Emma that way. That is why I would picture with pleasure having another baby with the same problems as Emma. By not being completely honest with myself about this I was selfishly thinking that I could continue to experience Emma that way. I realize now what I was doing and am making a concious effort to let that go. I may never have much interaction with that hospital again. But that is OK. Emma will not live again no matter how much time I spend there and any other children we have can never replace her in any way. Though I have said this many times to myself, I am just now trying to internalize it. And I am beginning to see more often in my imagination a healthy baby in my arms instead of another Emma.
I’m sorry this is so long. I will write more as I think of things I have left out that I wanted to say.