Saturday, February 7, 2009

Day 3 of this nightmare

Sent: Fri, 6 Feb 2009 6:28 amSubject: Steffanee> not sure what day.
I am planning to send out an update, but I want you to know. After eveyone left, we chatted, listened to Taylor Swift and chilled for about an hour. Then it was the worst episode yet- it lasted 40 minutes, with her getting very mean and would not let us touch her. It's even harder to sit back and let the nurse do it. But I did. Dave broke down. I got more angry, but backed off. I know she cannot help it, and was very exhausted before it happened. BREATHE BREATHE>Yesterday was still a better day the number of them went down a LOT. Today will be a better day. If she Dave and I make it through it. Seems like eternity...........later, the tired one.
The update-----
Hi guys. I'm sure you all know that Wed night was a very peaceful night for her and Thurs morning was much better than Wed morning. Overall Thursday was a better day. The episodes haven't stopped, but seem to be slowing down.She showered (first one) and we took a few walks. The walking is not real pretty, but I'm sure her muscles are very tight from all the folding backwards that she does. She did have a difficult time late last night. It was her longest one yet- we made it, not sure how...but we did. She is getting sick of dealing with it, we all are. However, today is a new day! and Today will be a better day. Dr Patel ordered PT to evaluate her back. She had been having low back aches since she hurt her knee, before her knee surgery. And it had gotten worse, I guess due to favoring the knee, changing her walk. Okay, this blogging is therapy for me> so bear with me. LOL Dave woke me up to come home before him today. Yeah, right. Who does not know that I am very scared of the dark?? AGH. 5 a m and I had to walk into that parking garage all by myself...thought I was going to freak out. Then the house was dark, and no one was home. It is now 6:15 and I am still alive. Okay, I know it's not about me. Maybe the dark was to take my mind off of our girl... it worked!! I'm off to shower and go back to my bedside duty. Thanks for the prayers, I believe they are working. Keep them coming. Robin Dave & Steff

Sent: Sat, 7 Feb 2009 2:06 pmSubject: Steff is up and around......
Hey! Dr. Patel is treating her for dystonia, the best I could understand him. He has thrown that word around quite a bit, but really didn't make that diagnosis. I believe he has exhausted most testing he has done, without any answers. The sedated MRI didn't happen. Seems one machine was down. They gave her benedryl to make her relax during the MRI, but after 10 minutes of being confined and listening to the noise, she had an episode. Not sure if the 10 min was enough for him to check out, or if we are going back in today. The new blood tests came out good. She did have an episode yesterday morning while all the student Dr. and the attending were there, so they all got to watch and observe-which was good. Okay, back to dystonia. What is Dystonia?Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for controlof a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. I copied that from a website so I wouldn't explain it incorrectly. He gave her one dose of meds in her IV> she had a shower, went walking quite a bit, went outside with the child life specialist and another patient, overall had a much improved day ! She only had approx 5 episodes all day, which is a BIG improvement. He decided to keep her on those meds since we saw improvement, they cover 3 things: pain, dystonia and something else. They did an evaluation on her tight little body, (walking is not too pretty) and plan on doing PT for her. Her walking will improve after her muscles heal from all this, they say. We are planning on bringing her home on Sunday, since all will be going well today! : ) Our house will be open for visitors, as she tolerates it. Maybe short visits. We will be playing this by ear. Will the meds keep this monster completely away? Not sure, I didn't get to ask Dr. Patel my 20 questions. : ) I do know that I feel good enough with this, that I am taking 3-4 hours away from her bedside to get some ME time. I feel that she is in very good hands. Thanks for each and every one of you for your prayers and thoughts. I think she will return back to that smart mouthed child that we all love, much stronger, after this is resolved. Have a great day and God Bless each and every one of you ! Robin Dave and Steffanee

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