I came across the article below in my Kid's Health newsletter (which is a great resource if you have a child with any kind of recurring health issues) and thought I would share. I remember when I arrived at Lucille Packard for the first time for Bean and the overwhelm, but also relief, when I ran into (literally could not pass in the hallway of the hospital wing) Bean's "medical team" in the PICU. I started learning the different levels of training of the people working with Bean. Some of my favorite people were the Residents assigned to her. I still see some of them who have gone on to do fellowships at LPCH. And may of the fellows are still there, although now that we are not actually in the hospital for rounds, we see them much less often. In fact, at our last heart clinic visit we got to see my very own Dr. McDreamy (its ok - my husband knows about him) who gave me the report on Bean's first biopsy at LPCH. I believe he had just started his fellowship in cardiology then and he dropped by to see Bean last week and was amazed to see how big she was and how great she looked (the hospital is the only place people are constantly commenting on how "big" she is). It really does seem like a "team" in the true sense of the word when they are all working together.
Anyways, if you have been or will be visiting any teaching hospitals or have a child with an ongoing health condition, the following article will give you a list of professionals with whom you may have dealings. Knowing the possible resources is half the battle if you are placed in a large hospital setting. I must say that LPCH was very, very good about educating us on the resources available to us, but I have heard of others who were not so lucky. So, being able to ask about getting a visit from a Child Life Specialist or an evaluation by a Palliative Care Specialist is something you may not think of without some knowledge on why you may want to speak with one of those individuals. It also helps to know who is making the decisions, who has oversight for care, and who is talking to who and how often to make sure that you understand all of the different voices that are being heard on your child's behalf. And finally, being confident enough to listen closely, ask questions and have (educated) opinions is something that made me feel better throughout the hospitalization with Bean. I am glad that I was trained in communication and felt confident in my ability to listen to things, process them and ask effective questions. I realize that many parents don't feel that way. I also realize that some parents may feel defensive about things because of a lack of confidence in their own understanding. So, a little knowledge can go a long way to alleviate some of that defensiveness and give a parent back some of the control they feel they lose when you enter the hospital setting.
I am so glad that we have not had to have another hospital stay in quite a while and I hope that we will never have to have one for more than a couple of days in the future (that is a hope against hope I think, but who knows?). But, I am also glad that I can now enter the setting when we need to with a knowledge and confidence that will allow me to be an effective advocate, a comforting caregiver and most important, a good mom to Bean. I hope that if you find yourself (or if you know someone who finds themselves) in this situation, that the following information will be beneficial.
Who's Who in the Hospital