I spent all day yesterday with Lauren doing a transfer from pediatric care to lifetime care. This is how it works. She has a team which includes, a physical medicine physician who is the case manager, 3 neurologists (that number may decline when things get figured out), an orthopedic specialist, women`s health physician, a technology specialist, orthotics technician, orthodontics/dentistry, a social worker, occupational therapy, physical therapy, and speech. Including myself and Lauren there were fifteen people present.
We met for the entire afternoon. Lauren left after about an hour because she was pretty much our of the loop and was looking bored with us talking about things that she does not understand. We had her AFOs repaired, got a part ordered for her wheelchair which will enable her to sit closer to the table (she is excited about that), started the process to re-evaluate her communication needs, got a surgery day set up for phenal, and talked at length about all of the neurological issues that are going on with her.
It went very well. I was amazed that everyone was able to stay for the entire time except for the orthodontist who got called for an emergency. I like this system of providing care for people who have complex medical issues. It works because everyone knows what everyone else is doing. They talk to each other and take into account all of the needs of the patient and their family and/or care givers. Until things get running smoothly we will be meeting quarterly.
Today I spent most of the morning at the clinic with Hanna. They took her pink cast off and did another set of x-rays. The doctor said they could just wrap her foot, but she would still not be able to put any weight on it for another two weeks. After a quick discussion we decided that she needed to recast because if we take it off she is going to walk on it or pound it on the wall or floor or something when she gets in her angry mood. (That happens far to often and is to violent for foot safety) I am surprised that she has not done any damage to that foot with the cast on. They were out of bright pink cast material, so the nurse ask her what color she wanted and Hanna says "not red cuz that looks like blood and it is gross, not blue cuz that is for boys, and not purple cuz we need to save that for Lauren (we have had plenty of purple casts) so green I can live with, but it`s really not a cool green". It is a pretty dull green for the Hanna look, but it works for me.
Tomorrow I don`t need to leave the house until about 4:45 in the afternoon. I guess I had better spend some time cleaning the bathrooms, doing laundry, and cooking because next week is going to be full of medical stuff, too. We are still in marathon mode with appointments. Some day there will be a week without anything scheduled, but I sure don`t know when that is going to happen since things are already getting on the schedule for August.