Wednesday, July 18, 2007
Last night I had a major anxiety attack and basically didn't sleep all night. Why? That story for another entry. Anyway at around 2 am I was watching an HBO documentary called "Coma." It brought a lot of very deep dark feelings back of when we were in the NICU with Sam. If you haven't seen the program (and I call it program and not show because watching the fate of 4 individuals struggle with rehab after severe traumatic brain injury shouldn't be considered entertainment) its intense to say the least and very, very sad. What hit me the hardest was how the parents of the individuals were told about the fate of their kids. Now the people that were injured seemed to be 20-30 something. Their whole lives pretty much would never be the same and all of their loved ones around them had to suffer the trauma of basically losing the person they loved and excepting someone else in their place. Certainly someone that they love no different but a completely different person. These young adults would never talk the same, walk the same, some lost their hearing, some lost their ability to eat, some lost their eyesight, and some lost all of the above. There were several points in the program where the families would sit in a conference room with a team of health professionals who were basically telling the families the fate of their loved one. What pissed me off was the overall expression of "oh well." And I got that sense by the body language and the actions of the doctors and therapists in the meeting. One total waste of a person sat there playing with an empty water bottle, others were eating and drinking coffee, and someone else was chewing gum. Now until you walked in my shoes or the shoes of anyone who sat in a meeting with a team of doctors telling you some awful news, you know how incredibly disgusting that is. This struck such a cord because I remember all too well at Columbia the very same situation. Most of the people in my meeting (and we had many) had coffee or they were trying to sneak pieces of food in their mouths, while the neurologist told me that my little gorgeous precious Sammy probably had Leigh's Disease. If you don't know what that is, its a very rare degenerative metabolic disease where children don't usually live past four. And the years leading up to four are dreadful. Back then I was weak and naive. I accepted what ever behavior the doctors and residents gave along with their pseudo diagnoses. Now things are very different. I hit a tremendous wall of tolerance months ago and I refuse to take bologna from anyone including a physician. But I do have to say Sam's team of doctors presently working with us are nothing but respectful and just lovely. They all really go out of their way to assist in any way they can. And if they didn't then they wouldn't be on our team, would they. My point in this entry of reflection is if you are a health professional think twice before being so casual when sitting in a meeting with a family when bad news or any new is presented. And if you happen to be on the unfortunate situation of being on the receiving end of one of these meetings and someone is drinking their Starbucks say this "Unless you want me to order a pizza and a keg of beer on your death bed get rid of the coffee and show some respect."