Big Meeting

We have our "case conference" with all of Megan's doctors, the hospice here in Indy, and the hospice from South Bend today at noon. We are being asked to consider taking her home when she stabilizes. I don't want to imagine having to care for her with the new medical interventions added from this stay to the last five months worth of care she already had. We were so overwhelmed and tired. (Not that I wouldn't, if it came to it.) But, we want to enjoy our time left without having to worry about what time it is for medications, feedings, medical procedures, etc.

I feel like I have asked all of the questions I have already regarding Megan's continual decline. Last week when the doctor on service had every other doctor consulted tell us there was no hope of giving our daughter any quality of life, it felt like they would help us with anything we asked for. So, I asked them all questions related to their specialty. When I ran out of questions for each person individually last week, I forgot to ask "What have I not thought to ask that you need to tell me?" (Not that they would offer any information that wasn't a direct question.)

It seems that even with the slightest in change of Megan's medical status, we have to be prepared for something totally different than what we were told initially.

This has left us feeling confused, deceived, and lonely. The doctors in South Bend do not have enough knowledge of Megan's health status. Whenever we bring Megan to them, they always consult the doctors in Indy, if not just place her in an ambulance en route to Indy.  I want the doctors that have helped us these past 10 years to be the ones who help us the last few days, weeks, or whatever time we have left.

I feel like everything that Megan has been a part of has been taken away. I don't want to feel abandoned by her doctors so close to the finish line. I don't want to have to transport Megan back and forth. She can't handle that type of stress. And, they may be changing the way we get all of her medicine, medical equipment, and other supplies that have already been set up for so many years.

I am very nervous about this meeting. I don't want to make any more decisions. I just want everyone to help us while we are doing the hardest thing anyone could possibly do - say goodbye to our daughter.