Tuesday

March 28th, 2006

10 a.m. or so: We arrive at the hospital. Visiting hours started at 9:30. We slept late, so we didn't get there before 9:30. Can't remember much from this day. Just the worry, the trying to talk with a doctor (you go to the bathroom and you miss them and then they aren't back until the next day). Dad knew us and he was trying to answer the questions the nurses and therapists asked. Many he answered correctly, but they couldn't understand him.

11:00 a.m. or so: Call my brother and ask him if he can come stay with Dad so I can take Mom and Jason home to get some clothes, pay some bills, go to the bank, and make some calls. Mom and Jason had only the clothes they wore when we left town at 3 a.m. I already had my suitcase packed and in the car as I was prepared for the 4 -day conference in Nashville that I was going to attend. My brother sounded a bit put out that I would ask him to come stay with Dad. He said he'd call me back and let me know if he could.

12:30-1:00: I think Mom and I ate in the cafeteria that day. I had spinach and mushroom dish, a salad, greens, and broccoli. I remember Mom had baked cod. It was sunny outside. It was noisy in the cafeteria. It was filled with doctors. I wanted to go from table to table to find a doctor who could go upstairs and figure out what was wrong with my dad.

Around 2 p.m.: My brother shows up and says he'll stay with Dad. He opens up his paper, doesn't make eye contact with me and states that he can make no promises about how long he can stay with Dad. I lose it. I raise my voice and point my finger in his face and ask him why he's acting like he's doing everyone some great big favor. I say, "Our Dad may be dying in there and you act like this is a Sunday walk in the park kind of thing and like you're doing all of us this great favor staying here with YOUR father so YOUR mother can go home, get some clothes, and take care of some things. What in the hell is wrong with you???? " He looked quite surprised. He said some nasty things. He said he refused to speak with me again. Jason was trying to mediate and telling us we were upsetting Mom. Ugly scene. Lots of anxiety, anger, frustration.

We didn't go home that day but planned to go the next day. Plans changed.

9:30 p.m. or so: Made our way back to the hotel. More drinks and sandwiches. My drinks of choice--wine or margaritas. My brother's: the cheapest beer available. My mom's: lots of coffee. We talked until very late and then crashed. We called the hospital for a report before going to bed. Dad's vitals were stable and he was resting.

Wednesday

March 29th, 2006

ETA--10 a.m. or so. Nurses told Mom that Dad had cussed all of them out the night before and was making so much noise and was so agitated that they gave him Ativan. At this point, he is on Dilantin, Ativan, Lasix, Morphine, Potassium, and I think some other things that I can't remember at the moment but I know I have them written on a scratch piece of paper somewhere--maybe in my purse.

1:30 or so p.m.: Mom, Jason, and I are waiting for the nurse to answer our call (you had to press a button, ask to come in, and then they'd unlock the doors). Dad's team of doctors come out of the NIC--Remmel, Wanahita, and another one whose name I can't recall. They tell us they still don't have a diagnosis and are still in the ruling-out process. I write this note on a scrap piece of paper I had in my purse: Anna Wanahita, Dr. Remmel. This weekend Dr. Michael Dobbs. Ativan, Seroquel, Toradol, Keppra, Dilantin. Tomorrow: NG tube--food/Acyclovir. EEG tomorrow--3/30/06. We asked why he was on so many meds and if the meds could be making his confusion and speech worse. We're told he needs the meds to try to help him relax and to calm him down and to prevent a seizure until they know more about his condition.We make the decision to stay in Louisville because the doctors are going to insert a feeding tube. They try but can't get it in. They decide to try again on Thursday.

9:00 p.m.: We stayed all day. Rode the hotel shuttle to and from the hospital that day. Got back to the room. Yes, sandwiches again. Think Mom had a salad and baked potato. Jason and I stayed outside on the balcony and talked until late. We also answered lots of phone calls and placed lots of them to update others on Dad's condition. Very restless all night.