I have been silent on my blog for over a week and after posting an update on Facebook regarding Tiara and her possible admittance to the pysch ward at UCLA, I went dark. I was so devastated thinking about leaving her in the hospital alone, I couldn’t really talk about the situation to anyone except Lou.
Last Monday morning we received a call from UCLA that a bed was available. Because Tiara had been responding well to the Resperidone and was much more calm, I considered passing up the bed and just keep going up on the meds at home. After Lou and I talked about it and weighed in the suggestions from all the professionals we decided we would still admit her. The doctors told us they would be doing intense evaluations of her and really focusing on her psychiatric state. Since we have only focused on keeping her alive or keeping the seizures away her whole life, we thought it would be a good time to have her properly assessed from a psychiatric stand point.
We were told to bring her to the Emergency room and after another evaluation she would be admitted to the ward. We arrived at UCLA at 2:30 pm and to make a long story short she wasn’t admitted to the ward until 10:30 that night. She was already asleep when they showed us to her room. The room was nice enough but I started crying hysterically. Lou stayed with her and met the nurses while I went into another room to finish up the admission process. I handed the nurse my 3 page typed document which listed everything she does during the day and how to properly care for her. She was very grateful for the document but I still needed to answer a bunch of questions. As I described Tiara and her needs the nurse looked over at me and said “you can stay with her during the day if you want?”
me: “What, I thought I could only come during visiting hours?
nurse: “Well, for cases like Tiara the doctors will sometimes make exceptions. Call us in the morning at 9am and ask the charge nurse to page the doctor and ask to come sit with her.”
me: “Ohhh, OK, I will!!!”
We finally left her sleeping in the room with a nurse stationed at the end of her bed and didn’t get home until 12:30am. They promised me she would have someone with her constantly so I knew she would be safe during the night but nevertheless I couldn’t stop crying.
The next morning I woke up and called the nurses station.
me: ” Hi, this is Tiffani, Tiara’s mom. I was wondering if I could come sit with her today?”
nurse: “Oh, I think that would be fine, I need to check with the charge nurse but she keeps asking for you and I think we need your help.”
She places me on hold
nurse: “She said it is fine. What time will you be here?”
me: “I can be there by noon.”
nurse: “So you are coming by noon?”
nurse: “Ok, good, I’ll let Tiara and the other nurses know.
I thought that was kinda strange but I quickly took a shower, found something for Trinity to do and got on the road.
When I arrived at her room, she was sitting in her wheelchair eating lunch with a nursing student. She was wearing 4 different tank tops, two which were dirty and there was food all over, just like at home. Her pencils were scattered all over the room, her ipod was on the ground broken and she screamed in delight when she saw me. After I got her and the room cleaned up we did what we always do. She colored, I read, I read to her, she listened to music, I changed the songs, etc.
I spoke with one nurse for a while but other than than we were alone in the room with a aide seated outside the door, making sure she was safe. The doctors came in to meet me and talked about how complicated her case was and suggested increasing the medication by 1/2 pill. Hmmm, that’s what I was doing at home?
As the day went on I started to get a sinking feeling in my stomach. ” i don’t think this is the right place for Tiara.” It seemed like being on the general floor of the hospital but with extra security. I asked to have the doctor paged and told the nurse I was considering having Tiara discharged. Her response: “I totally understand.”
I spoke with the doctor over the phone and told him my concerns and he agreed it might not be the best place for her. He asked me to give him some time to talk to his attending.
We continued playing and hanging out like we would at home except there was no extra help or no car to drive her around in. The doctor actually showed up and I asked about “the intense evaluations and assessment of her psychiatric state? When was this going to happen?”
him: “Well, sometimes people think this ward is something different than it really is. The team meets twice a week and the primary nurse in charge of her reports to the doctors and we all discuss her behaviors and actions.”
So basically we sit here and I would be welcome to watch daily?
me: “Ok, then we want to leave. I can do all this at home in an environment that is more stimulating and with more help.”
him: ” I totally understand and I agree it might be better for her. I’m sorry we couldn’t have been more help or have more to offer you.”
So we packed up, got our discharge papers and were home by 8:30 that night.
You may be thinking: What a waste of time? Well, Lou and I both think it was a valuable experience. We know now what the pysch ward actually does and does not offer a patient like Tiara.
As for her behavior. We have increased the medication again and I am making an effort to stay calm and not do much when I am watching her. My anxiety and stress from the move was escalating her behaviors. I am also focusing on being much more strict and not allowing her to hug me around the neck or touch me while I am driving. It seems to be working and she is pretty drugged from the meds, so for now life is pretty calm.
Thanks for all the prayers and support!