Wednesday, March 6, 2013
Mo's appointment with the cardiologist
Mo had an appointment with a cardiologist last week. It was a follow up to our appointment with the hepatologist. The hepatologist, who was not at all prepared for the meeting we waited for months to have with him, told us that when looking at Max's heart slides, he felt something wasn't right. He likened it to "a brick wall whose rows look straight up close but when you back up are not". He said "something wasn't right with the architecture of Max's heart". This was very upsetting news to both Ted and I, of course. We were referred to a cardiologist who could give Mo an EKG and an ultrasound.
Last week I brought Mo in. I went over all of Maxie's history with the cardiologist. We talked about his autopsy (something I HATE talking about), his death (as told to me by the daycare, which I also HATE talking about), the testing we've done on us, our genes, Mo..... He gave Mo an EKG and an ultrasound and determined that Mo is fine. Of course, the only way to tell that Mo is really fine, would be to take a biopsy of his heart - OBVIOUSLY something we won't do!
The cardiologist didn't really understand the report of the hepatologist and offered to visit with him and get more information for us. So, a few days later, the cardiologist went to meet with hepatologist. The hepatologist said that he didn't look at the slides himself (as we were led to believe). The lab technicians did. The report didn't even say which technician had been the one to review them. So, my cardiologist went on a hunt, through the computer records to find the right technician. He finally found her after a lot of digging. She remembered looking at Maxie's slides....and no, nothing was wrong with his heart. What she saw was likely caused by the chest compressions given during CPR. Again, Ted and I were totally misled about what happened to Max - information passed along like a game of telephone by a bunch of apathetic players - from the coroner, to Maxie's pediatrician, to those who passed information on to the police, to the lab technicians.
I am totally relieved that we don't have to be worried about Mo's heart but it really brings everything up again....and again....and again. It's amazing to me how little people actually care about a dead child...and his sibling. It's amazing how they seemingly don't care about the quality of the work they do ...as doctors! I will say, the cardiologist was a lovely man. He confided in me that his wife has suffered through several late term miscarriages and how he knows about loss and grief. His wife is due next week with their first child...finally. I was touched that he shared it with me as he said he has never shared it with another patient. When he called me with the technician's report he asked if he could talk to me like a friend. "Sure", I said. "You seem like a wonderful person and mother," he said. "I would hate for you to stop having any trust in the world. Remember that there are people who want to help you. Have faith in human kind."
I think I still do have faith in human kind (mostly)...but trust in the world is a whole other issue.