Saturday thoughts...

It seems that we have found a medicine combination that works in allowing Keyan to get some rest. Last night we gave her some Valium around midnight and that helped ease her fears of what she was "seeing" and what her body was doing but would not allow her get that much needed rest. So at 2am we tried a dose of Ativan and the combination of the two seems to work. She was able to sleep from 2-8 this morning and it was so great to see her get some rest...not to mention that I was finally able to do the same!

This morning she woke up pretty agitated but was smiling occasionally. Our dear nurse Laura and I decided it was absolutely necessary to get her cleaned up seeing that she still had EEG goop in her hair! Laura went to work on getting her clean and I took a few minutes to get in the shower too. While I was letting the water sooth my weary body, I realized that I could not remember when I had showered last either....how frightening...I have been so engrossed in doctors, procedures, taking care of Keyan, and making decisions, that I basically did nothing else! I took a few extra minutes and just enjoyed the sound of the water...it felt so good, and I am sure I smell better too!

After getting cleaned up, Keyan was quite worn out but again her body would not let her sleep. We decided to try the Valium again and this time, she was actually laughing and a little playful for about an hour and a half. After that though she was just writhering around, crying, and her body was jumping. It is like having restless legs but at least a million times worse. It is so hard to watch her struggle because you can't do anything for her. Two of the doctors were actually able to see her in a full blown distress and they recommended another dose of Ativan. Sure enough, within a few minutes her body had quieted and she drifted off to a peaceful sleep. It was great to see her calm and resting.

Her hallucinations are becoming fewer and it is getting easier to bring her out of her own little world. It is amazing how my priorities have changed just in the last few days. Right after her seizure, I was consumed with worry that she would not be able to walk. All I wanted was to have her up and getting around. Since the involuntary body movements and delusions, I could care less if she can walk right away, I just want my Keyan back. Her smiles, laughter, bright eyes, and smart wit are something that I can not live without. I don't think that I will take the small stuff for granted anymore. We are seeing bits and pieces of my girl but she is certainly far from being herself. I have never realized how thankful I am for restful sleep and a quiet mind. Please God, grant these back to Keyan!

The weekends are always quieter at the hospital and that has allowed me a little bit of time to start processing what we have been through. I can spit the facts out like a computer but I have not dealt with the emotional side until day, and it was still just a peak into my soul. My mind will only allow me to deal with it a little at a time. I realize today that our worst case scenario happened in the best possible way. When Keyan began to seize, both myself and her nurse were right there. We responded within seconds and got oxygen to her right away. The doctor happened to be standing right outside the room and he was able to get to her and take charge of the situation immediately. I know that the nurses and doctors would fight for any kids in here but Keyan has grown up on this floor and is loved by all...they were taking it almost as personally as I was. I have played it over and over in my mind and continue more and more to realize how lucky we were to be at the hospital. It is so uncharacteristic for me to bring her in on the first day of a fever...normally, we would have been at home, and this could have had a very different outcome. In the darkest of moments, I hold on to that little bit of light.