Wednesday March 28, 2012:
I stopped my feeds about 6:00am and got dressed and we headed to Orlando. We got to the office and waited there for about 20 minutes and then I saw Dr. Sanjay. He was so nice an completly understanded. He said he would call his collegue to see if they could do the prodecure under IR today. (wednesday). We were so thankful. He then sent us to Florida Hospital in Orlando. We got there and waited in the waitng room for maybe another 20min and then they called my name. We went back the room and I got changed into a gown and they started an IV, which took them 5 tries. It was then about noon. The nurse said that they couldn't do the procedure till 2 because of when I got off my feeds at 6am. That stunk, then we waited for 2 hours and the radiologist came over an told me they were going to give my versed and fentl and do the procedure while I was awake. I had no problem with that. It was better that way cause I react to anestia. So they take me back to the IR and they give me the 2 medications and from what I am told, I had multiple medicated induced seizures. I can remeber the young kid raidologist saying "this is the first seizure I've seen" (when I woke up.) They sent me then to the ER. I blacked out a bunch of times in the ER. The ER dr was so confused on why they sent me down there. They then said they would put in a consult and the raidologist would have to deal with me tomorrow. So they took me up to a room. I can't really tell you much else that day becuse I don't remeber. But I do know that I had a very nasty nurse that night.
Thursday March 29, 2012:
They came and got me around 9am and said they were going to use the same medications to do the procedure. I was like no that's not happeneing. The nurse then said that anestia was going to come down and talk to me about using other form of general anestia. I don't remeber alot. Sorry, but my mom told me that they got the GJ button in and then in recovery I had very scary seizures. She said I was foaming at the mouth and vomiting and shaking and they were alot worse then the day before. We went back up to my room after the procedure was done. They said they were going to keep me over night and I said no and refused, espescially when I found out I had the same nasty nurse again. So we left the hospital around 10pm. I got emotional on the ride home. Just really scared for the Lyme treatment.
I talked to Dr. Fox my lyme doctor today and basically I told her about my seizures which she says that a lot of her other lyme patients have seizures and the doctors can't figure out what they are either. She says she called them lyme seizures because the brain gets mixed messages because of the lyme. Anyway I am going on Lamictal (seizure med) and she said it might help the swallowing since she thinking that it is due to inflammation in the nerves. She said the Lamictal will help my RSD but maybe not my seizures. Anyway I am suppose to titrate up on to it. And I will start the actual treatment in 2 months.
Yes I am very scared. Terrified! It's so scary on what you don't know. Does that make sense? Idk. Well today was a resting day. Running feeds into my j tube at 75ml and hour! Had some seizures today but they were short and small.
thanks for all the prayers,