Hi everyone. Thank you so much for your well wishes and prayers. I only ask that you continue them. My brother and I flew home this morning but we'll be flying back down to FL tomorrow night.
This has been the hardest and worst week of my life. Cheryl is not getting any better and the Dr's can't explain why. They have ruled out epilepsy and have ruled out any growths on her brain. There is no reason, so far, why she is having seizures. Her CT scan and MRI came back clean. We flew in late Tues night so didn't see her til Wed. On Wed am she had a Grand Mal seizure. Wet herself and all. (tmi, I know) I am the ONLY person she has consistently recognized. (I asked her during one of her lucid moments why she thought this was the case and she said she has always known since we were kids that I would always be there for her no matter what - that I am the only constant in her life she knows she can count on and that is why she could never forget me) Good for me, bad for everyone else. It took me an hour and a half on Wed to get her calmed down after her G.M. seizure. My brother (who flew down with me) walked into the room with my sister's girlfriend. (for those who didn't know, she is gay) When he walked in she became hysterical b/c he was "so old." My sister thought it was 1996 and couldn't understand why my brother wasn't still 15 yrs old. She was terrified. She actually asked if Cynthia (her gf) was HIS gf. She had no idea who she was. After an hour and a half she was okay to have them in her room again. She had another seizure on Wed afternoon and we went through the same thing, just not as drastic. On Thurs she had 3 seizures, Fri was 4 and Sat was 6. As of 4:40pm today she had had 4. I'm sure there will be more before she is finally out for the night.
Right now she is being monitored 24/7. She is on 4 different kinds of anti seizure medication. They have moved her to a private room that is specifically for seizure monitoring. She has EEG leads attached to every area of her head and is video monitored as well. She is able to let us know if she is going to have a seizure. Well, we ask how she feels - if she feels funny - and she will say yes, she thinks she is going to have one. We hit the alarm on the EEG pack to alert the nurse that she has "the aura" of a seizure and then we have to hit the alarm again when she goes in. The nurses come in and give her a code phrase, ie: pink cat, red wagon, something similar to see if my sister can retain it during her seizure. Sometimes she is able to remember the color but never the whole phrase. When she awakes from the seizures we go through the same routine: Who am I? "my sister" What is my name "Christine" etc. Same questions over and over.
My brother and I had to get up at 4am to fly out today. It was the hardest thing I have ever had to do. I was sobbing when I left the hosp last night b/c I did NOT want to leave her like that. But I had to come home to my family. Here I am - the rock is on my right and the hard place is on my left. Cynthia called me this afternoon. Cheryl isn't doing well. She is unable to feed herself - Cythia has had to feed her all day. She can't coordinate her hand to her mouth. I talked to her on the phone and she is slurring her words as well. She doesn't even sound like my sister. She woke up this morning and cried b/c she couldn't understand why my brother and I had left her. She couldn't remember we had to go home.
I bought tickets for my brother and I to fly down again tomorrow night. I need to be there. Tomorrow she will have the EEG leads taken off and will have a second MRI to re evaluate. I'm praying to God that they don't find brain damage and that she will be okay. Her GM seizure on Wed last for 30 minutes. Her "typical" (is there such a thing???) seizure length is 4-5 min. But that doesn't count the period of time that her body shuts down afterwards. That lasts another 15-20min before she becomes responsive again. My job is being ridiculously understanding. My boss specifically said to take care of my sister in FL and not worry about work or anything at the office. She is wonderful. John is a SAINT. He, of course, would rather me be at home with him but is so supportive of my going back down. He starts his new job tomorrow so I told him that he needs to stay home. We have waited too long for this. He is also here with Aidan. I would never bring my child into this - we are at the hosp at least 10hrs a day - and I would never ask someone else to take care of him for a week. I am much more comfortable knowing he is home with his daddy in his own bed.
I'll stop here or I will rant forever. I am physically, mentally and emotionally exhausted. I am trying to be strong for my entire family but I haven't stopped crying all day. I need to get it out before I go back b/c Cheryl can't see me like this. I have to be strong for her.
Thank you if you have read this far - I know it's long. Please continue to send prayers for my sister and my family. They are greatly appreciated. Thank you to each and every person who takes the time to read this - you are all so important to me.
I promise to catch up on all posts just as soon as I can but I don't have computer access in FL and I won't be back home again until next Sat. If I can get on to post tomorrow I will but that will only be when Aidan naps - I want to spend as much time with him as I can before I go.