This has been a long fall, full of medical drama and discussions. Kate is not an easy child to care for medically as she is very unpredictable and living with a disease that only 3 other (surviving) people in the world are known to have. Keeping her safe and well is a complicated task and involves a long list of doctors.
I am sure over the past several years that I have met hundreds of doctors either directly or indirectly involved in Kate’s care. Hundreds, and the number is no exaggeration. It really is mind-boggling. The one constant among all those doctors is Kate – and me. We are the ‘meat’ in the medical sandwich. She is the focus and I am the coordinator, constantly shuttling between doctors and specialists to engage them, ensure they are sharing information and are up to date/informed about Kate’s ever evolving situation, and managing Kate’s care with each and every one of them as individuals. Despite the wonderful coordination of complex care program we are involved in – and the significant assistance in this type of coordination they bring to Kate’s case, I’ve come to realize this role will never really end for me.
Kate’s primary team has come to know me well as the mom of their patient, but also as a person. They know I am easy to get along with, they know I understand a fairly high level of medical jargon and dialogue, they know that I am very keen to be told any and all information – no matter how preliminary. They know that I like clear and open communication. I appreciate that they respect me as part of Kate’s health care team, and that they understand I wouldn’t have it any other way.
Sometimes this feeling of ‘teamwork’ and being ‘fully informed’ goes a little off track, and it is typically when a new doctor has been thrown into the mix. Usually this happens at the ED when we invariably meet a new team of doctors caring for Kate during an acute episode. It is a short-term lack of communication where I may not be kept fully informed of test results or care options. Usually it is the really big drag of having to recount – again – her history, which is a long and complicated story that the rest of her team knows so well. Sometimes specialists are not paged who should be because I assume the doctors are communicating as I have become accustomed to, forgetting that these doctors don’t know Kate as intimately as the regular members of her team do and might not think about who needs to be paged (and when) and wouldn’t consider asking ‘the mom’ who should be called in to consult. These times can be frustrating as a parent – as a parent of a medically fragile and medically complex child. They eat away at energy and lead to feelings of anxiety and worry that are unnecessary if only the information were shared or the mom ‘consulted’.
This feeling is made worse when you leave the comfort zone of your familiar hospital surroundings to consult with specialists at another medical facility. With Kate, we have been to Sick Kids several times to meet various specialists, McMaster Health Sciences Centre, The Mayo Clinic, and have tele-consulted with the National Institute of Health in the US. Each time meeting new doctors (and their fellows and residents), telling Kate’s story and tying together all the pieces to try to give a clear and accurate picture of her history and all the medical specialists involved. Recently we’ve returned from another such meeting with yet another new team of specialists. We have learned a lot from previous meetings and we are well versed in doing our homework in advance. There is now careful preparation of documents and information by her medical team preceding our visit, and typically much planning and discussion that goes on with our ‘home team’ before we visit anywhere. We feel well prepared about the focus and intent of the meeting before we arrive. The difficult part for us is when we are not on our ‘home turf’ and meeting with doctors and specialists who again – don’t really know us. Conversations tend to be vaguer, points of view may (typically) conflict with the existing one, details are glossed over as they focus on ‘what the parents need to know’.
As I write this I recognize there are many variables at play here: (1) we are there for a consultation in an area that is not otherwise covered by our home team, or where a second opinion is required – so the information will be new and different (2) second opinions are going to differ in point of view and conflict with existing thinking/approaches. What I find frustrating is that the different points of view can be because they don’t have the same history with Kate and they haven’t had a lot of internal discussions about her. They haven’t seen her episodes, they haven’t seen her crisis, they haven’t seen acute life threatening events. They also don’t mine from us the detailed and historical information we have – but focus on their script for taking history. Their answers to our questions are vague and require much more introspection and analysis than they are willing to give in a first meeting. And I get that is appropriate, you aren’t going to talk in detail until you have really thought it through from your own medical perspective. But what it does for parents is put us in the meat of the medical sandwich. While all others meet and discuss and analyse tests and discuss again on the periphery – we wait on the inside (supposedly patiently). There is no where for us to go, there are no more questions we can ask, there is no further connection to be made but to wait. I find that wait interminable, and so I do ask questions, email and make phone calls. I follow-up and I push and I start to get to know these new specialists and let them get to know me. Trust develops as does respect, and soon we are in a state of much more open communication. It takes time to get there though – and that is exhausting and daunting, especially when you are starting it with yet another doctor. And this is how I am feeling today having just returned from our most recent trip.