This has been the post stuck in my head for weeks--keeping me from writing other things. It's haunted me for a year. The doctor in charge of the CCU at Lucille Packard Children's Hospital at Stanford gave me his card before we walked out of there without our beloved son. He said if we ever wanted to contact him, we could. I do.
Dear Dr. Roth,
It was a year ago today, Friday, that we brought our son Ian to Stanford. You said I could contact you if I ever wanted to. It's taken me this long. Before I say anything about the 4 days he was at Stanford, I want to tell you one of my memories of a stay at Boston Children's. It was a long stay, in fact I don't even recall which one or what the specific issue was, as there were so many stays and varying issues. I remember you coming into Ian's room on 6 East very late at night and kneeling down next to my makeshift bed. You spoke so softly and told me Ian needed to be moved (or moved back) into the unit. I cried and you said the best thing for Ian was to have better supervision and resources. You were so kind. I trusted you. I thought your manner with me and with Ian was so respectful. I never forgot it.
I heard years ago that you were now here on the west coast. I actually wondered if someday we would have to see you again. Then 2 years ago we went to an A's/Redsox game and you walked right past our seats. I wanted to grab Ian and follow you to show you how big and healthy he was and thank you for what you had done for him. He had done so well since his fontan 10 years before. I think only 2 caths in 10 years. We were lulled into thinking he would grow up and live a long life.
I have so many questions. I haven't asked because I know how things work. I won't get answers, but I want to ask anyway. I know you have MandM conferences and discuss what goes wrong. Did anyone say, "Gee, his kidneys were failing, his liver was failing, his temp didn't even register on the thermometer, Maybe we should have done something." I couldn't sleep for months because ever time I layed down I could hear Dr. Oleson saying, "I don't think we need to bother the cardiac failure team on the weekend." I don't know if Ian heard her say that, but I did. Can you imagine what that has done to me? I had to leave my son's body in that place where I don't think enough was done for 3 days and then it was too late when he was finally brought where he needed to be. I blame myself for not bringing him sooner, for not shouting at the doctors and telling them myself that his heart was failing. I'd seen it before. I knew what it looked like--but I trusted and I didn't want to scare him and I wanted to deny what I knew. But I trusted they would see it and fix it--and fix my son. He's gone and I want him back.
Many people advised Keith and I to pursue action against the hospital. We haven't. They say we need to make things better for the children who come there in the future. I remember telling them that I don't care about any other children, mine is gone. I told them I didn't want to wreck any doctors' lives. I just want to know that behind closed doors somebody said we should have done things differently. Again, I know, you can't tell me. Almost 16 wasn't old enough for my son. He had plans. He wanted to serve his church for 2 years in an exotic place with cool food. He wanted to be a chef or a movie critic or sportscaster. He wanted to have a girlfriend. He wanted to beat heart disease.
Now I'm left with the guilt of not only giving him that broken body, but not keeping him alive in spite of it. I'm sure you've saved hundreds of kids' lives. You saved his--in Boston. I wish we had been there last summer. I think the outcome would've been different. I'm sorry for saying so.
Please tell the doctors to be careful what they say. We hear them even when they think we can't. Please tell them never to work on the premise that it's just a stomach bug. Please tell them that parents need to blame them, because if we don't, we blame ourselves. Please tell them to check the personal effects bags more carefully so that clamps and viles of drugs that didn't save someone don't end up with parents who bury their children.
Ian was and is a miracle boy. The ache doesn't go away. We aren't fine. We never will be again. Thank you for your part in keeping him with us as long as he was.
Sincerely
Michelle Gleason
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