Life has been really challenging lately. I spent this week in the hospital with Jovanna. She was still suffering from dystonia movements and it was getting pretty scary. We checked her into the child psychiatric unit to try to figure out what was going on. I didn't really want to take her there, but the doctors working with us felt like that was best. The doctors who prescribe the medications that cause dystonias are there so they would be best able to help us. When we arrived, they took Jovanna to her room and took me another direction to do paperwork. I didn't bring her there for behavioral reasons, but for a medical condition. She was highly disoriented when we brought her in because they had me give her Ativan (sp?) and she was not thinking clearly. Within 60 seconds of being there, I heard her screaming. They had put her in a seclusion room. Two hours later, when I was finally done with their paperwork, she was still in there. I was so angry. It is such a fine line you walk as a parent. I need to advocate for her but I don't want to make the people who are taking care of her angry.
What was most upsetting to me is that they spent two hours with me doing paperwork, but they didn't spend anytime asking me about what is going on with her, what has been happening, what have I been seeing. So, she is highly medicated on this drug that is making her disorientated and not think clearly and they throw her in a seclusion room for two hours. Part of the dystonia which is tardive dyskinesia will at times make it so her tongue is kind of paralyzed and she can't move it and she can't talk. During the day, she would use her finger and point in her mouth to let me know that she couldn't talk. I would hand her paper and pencil. They were telling me that she was self-inducing vomiting and I just lost it! I said, "No she is not! She has never done that. There is no way that you are going to tell me that she is self-inducing vomiting. That is not something she does." This lady then said, "Well, she was using her finger and putting it in her mouth." and this lady then made the gesture showing me what she was doing. I told them that is what she does when she can't talk. Then I complained that they had spent no time with me learning what has been going on with her.
This was a very difficult experience. It turned out to be a positive experience but the whole first 24 hours were pretty darn difficult. The doctor following her moved her to a room with two beds and they allowed me to stay with her for the rest of the time she was there. That worked out real well. The doctors had to do some research but what we found out is that a medication she is on that was not known to be related to movement disorders, is linked to movement disorders in rare cases. They had to do some research to figure this out. That medication was removed from her regimen and we haven't seen any more movements since. She is on very little medication now, which is wonderful and I really hope that we can move forward without any serious medical scares.
On another note, I signed on my house on Thursday night (they met me at the hospital) and we are expecting to get the keys to the new house on Monday or Tuesday. We are actively packing and loading a truck. Yeah!!!!!