When it Rains it Pours

Friday, September 11, 2009

When it rains it pours

As for Arianna she had 2 really good days. The last 2 days she didn't have to have a blood transfusion or a platelet transfusion. Mom and Travis said that her countenance was so much better. She was smiling, laughing, and talking. She got to talk to her brothers and sisters over skype. They were all so happy. Last night she had a bad night. Travis said she was in a lot of pain and didn't sleep well. She had to have a blood transfusion and a platelet transfusion this morning. Hopefully, this will just be a little dip in her recovery. The last 2 days have been so promising.

Jaden has tail spinned into another one of her episodes. Only this time, what usually takes about 2 months to progress to has taken only 2 days. 3 days ago she wasn't having any seizures during the day. 2 days ago she started having them every 2-3 hours. Yesterday it increased to every hour in the beginning of the day. By afternoon, it was every 1/2 hour. By night, it was 10-15 min. Between midnight and 3:00 am it was every 8-10 min. We ended up giving her diastat at 3 am. It's an emergency medicine that is injected rectally. It is used for cluster seizures (which is what she was doing) and for seizures that last more than 10 min. After the diastat she slept until 6 am without a seizure. Then she had one again at 7 am. After that they have continued like clock work every 20-30 min. I called her neurologists yesterday. I had to leave a message for the Drs. I hadn't heard back so I called again at 7 am. The receptionist said they would flag the message as an emergency and have the Dr. call me back. It's now 10:00. I still haven't heard from them.